Everyday Heaven

Journeys Beyond the Stereotypes of Autism

Donna Williams

• Publisher: Jessica Kingsley Publishers
• Year: 2004
• ISBN:
  9781846420818
• Topic: Psychology
• Subtopic: Autism Spectrum Disorders
• Index: Psychology

Everyday Heaven is the much-awaited fourth installment in Donna Williams' series of best-selling autobiographies about her life with autism. A humorous, riveting, roller-coaster of a book, Everyday Heaven covers the monumental nine years from the time Ian left their accidental, 'autistic marriage', to Donna's candid, funny, often bumbling explorations of sexuality and orientation, the challenge of coming to terms with the sudden deaths of those closest to her and finally knowing what life was like without the invisible cage of her 'Exposure Anxiety'. Described as enthralling, deeply moving and gripping, this book will strike a lasting chord not only with autistic readers and professionals seeking to better understand those on the autism spectrum but all of us who simply dream of daring to love deeply, to adventure and to deal triumphantly with the losses along the way.

Everyday Heaven

‘I think you will always be a travelling girl,’ said Fritz, the German man in the seat next to me, in his broken English. He was quiet, gentle and jolly. I had only known this man for the thirty minutes I had been the hitchhiker in his car as my music played on the radio, my voice filling the void while the world whisked by. That’s the way dreams work, I guess. Already, though, I sensed a strong spirituality about him as though, like me, he looked not just past the image of the person, maybe even beyond time and space. The wildness in me had found his words and the faraway look familiar when he had said it, and I dreamed that in me came a thought-feeling: no, Fritz, you got it wrong.

The daylight of dawn at its peak kissed my eyelids and woke my soul on this crisp blue-skied September day in Wales. I opened my non-registering eyes and they stared blankly ahead into a meaningless array of colours and patterns that happened, by chance, to be the bedroom wall and the window looking out onto the fields of our Welsh farm. I loved those dreams of my music, dreaming I was hearing it played on the radio. But it was never real.

Behind me was Ian, tall, willowy and sullen, who wouldn’t be awake for a few more hours. It had only been seven months ago that I had bought this big patch of green in the middle of Welsh-speaking nowhere land. This was Ian’s dream of the ultimate privacy away from ‘the world’. Still like brother and sister after ten months together, he’d been ready to leave my cosy one-bedroom shoebox by the train station in Essex after becoming a predictable piece of the furniture there. Either he was going alone to get himself a flat somewhere, or I would buy a farm. And not just any farm. He had a prescription for his ills, his progressively paranoid aversion to what we called ‘the world’. It had to be a farm away from all other neighbours, enclosed, if possible, within its own land; and of course the brand new Mercedes. Essentially, Ian had ordered a modern-day castle, complete with golden carriage. So, not wanting to shake up the security I had now established in living with this ‘best friend’, I bought his dream and we moved from my rusty Ford Escort and tiny miner’s cottage to be peas rattling about in this pot and shopping in the Merc. And I held keys to neither. I would forget them if I was entrusted with them. Like the money and the phone, it was much more sensible that Ian handled them.

The once-in-a-lifetime book royalties had covered the costs and the place was massive as requested, with three upstairs bedrooms, one for him, one for me, one for us. Downstairs lived a massive kitchen, a dining room, a sitting room, a lounge room. Then outside, the stables with several outbuildings – and there were only two of us and not so much as a cat or its fleas to share it with. All that mattered was that I had a friend and was not alone.

It was only ten months before that Ian had helped us find out that we each wanted to be married.

‘Checking’ operates on a preconscious level. It is a way of tapping into the sensing reality and avoiding interpretive thinking which blocks out awareness of things it assumes are not ‘us’. Asking oneself a question can’t evoke a purely emotional response because it addresses the mind, not the emotions. Making a provocative statement out loud before a witness, however, stirs up a sense of sudden exposure at the statement, evoking either a non-response if the statement is untrue or one of ‘caught me’ if the statement has some truth in it.

We took it in turns stating, ‘I want to be married’. When the response was evoked, it came with no thought, no understanding of its context. It worked on a distinctly separate system from thought or reason.

We never considered the fact that although we’d checked about whether we each wished to be married, we hadn’t checked on Ian’s part about why he wished to be married, nor on mine about who I wished to be married to.

Ian’s statement evoked excitement. Mine left me beaming like a child caught with my hand in the sweet jar, and the more I wished it off my face, the more the expression insisted on breaking through to show itself to the world. In the next instant, a rather happy Ian determined his quite wealthy friend had to follow through with her wish to be married. There was only one problem. It was not him, but the Welshman, Shaun, I had always wished I’d been married to. But did I say anything? Did I defy his assumptions about my obvious want to be married? Did I fly in the face of his enthusiasm about my response and be open and honest that I was still in love with the Welshman, my once-upon-a-time love of my life, allergic to commitment? Nope. And here I was making the best of things with ‘my friend’. I had broken rule number one, be honest with thyself and others, whatever the cost.

My head still on the pillow, my mind, now awake like a wound-up spring about to ping, was having intangible thoughts that evaded consciousness by just a step but were somehow still there like some waking dream. The expressive calling in me of unknown knowing drove my body away from the human toast next to me, out of bed, down the stairs and to the computer, grabbing my special tinted lenses and dressing gown left lying in my path to trigger me into taking it on the way. Can’t do by oneself, for oneself, as oneself, but I was merely tidying the floor.

As I put my tinted glasses on, the bedroom sprang to life as more than colours and shapes now. The meaningless patterns and colours were now the window and the curtains and the view outside as my brain started now to keep up with the flood of what was coming in.

I had spent all my life struggling to voluntarily access and hold a conscious thought. I had loads of stored triggered ones like quiz show buttons which fired as if of their own volition whether fitting or not.

I felt alienated from the process of thought, and only consciously let in on the product, as though I was continually possessed yet able to consciously experience the possession after the fact. Through writing, all my unknown knowing typed itself out. It spoke to my conscious mind through my eyes as they read my words from the page. I had found a mechanism via which I could move preconscious unknown knowing into consciousness and it made me feel whole and in control of my life, my thinking and my expression.

Ian could help me use monitored conscious, accessed, self-expressive speech by setting up plastic cows through which I would play out who said what and went where and what the response was. But Puter didn’t require spoken words. Puter linked directly from thought to fingers and back in through eyes to mind with no overload and no blah blah. Puter involved no weary physical mechanics of coordinating lungs and tongue and mouth and voice box and the conscious plod plod it took to retrieve self-expressive, non-stored words or phrases for speaking and shape them into a format that was easily comprehensible. Yet, Puter had no familiar smell and Ian did. Puter didn’t do ‘hair’, running fingers through my long curls hypnotically till I felt inaudible purring. Puter didn’t cook taste-buzz dinners or answer the phone, saying ‘no’ and ‘she’s not interested’ on my behalf and stopping life from sweeping me away in an ocean of its wants in the absence of any awareness of my own.

‘Er-er-ee-er-er,’ said the computer as I started it up and started typing. ‘Stop it!’ I said to myself, as I remembered Ian’s rule that was stored within the parent in me: ‘No computer before breakfast.’ And I needed a pee badly. And I was cold.

My body sat in the chair, my hands typing automatically, my eyes reading the unknown knowing that poured out from within me and greeted consciousness as the words hit the screen. If nothing else, I seemed always freed up to type. Pee, no. Get a jumper on, no. Get a drink or some breakfast, no.

The addiction to self-feedback in a world in which meaning still dropped in and out like faulty headphones, made it hard to move myself from the chair to fulfil what Ian and I had agreed was a sensible rule. The struggle between compulsion and want gripped my stomach and made breathing tight, forcing recognition. I got the message and with half of me still reaching for the keyboard, my body was on the way to the kitchen; breakfast THEN computer; I ordered myself about as Ian. Old dog learns new tricks.

It had taken me two days of good intentions diverted into everything from scrubbing the bathroom to cleaning out the chimney before I was finally able to get my hand and mouth in line with the phone, dial and get through to my younger brother. None of them had a direct address or phone number for me in case my mother got into one of her phases, so my contacting them was the only way to link up unless they left a message via my agent. My brother’s voice was warm but self-protective and clear in spite of the ten thousand miles the sound had to travel.

‘When you coming over here?’ he asked.

‘Soon,’ I replied avoidantly.

‘You got a date?’ he questioned.

‘Yeah, but not sure what it is,’ I answered, knowing any information I gave would be siphoned out of him by my mother desperate for ownership and the social image it restored for her in the eyes of strangers, at the hands of guilt.

‘You gonna see Ma?’ he asked.

He knew the answer and he knew how I felt and why. He had been the kid sent to the front door to get me from my flat when she insisted on keeping control. If I couldn’t see her, he was not allowed to stay and talk to me. Still, here in our adulthood it was as if the role had not changed. Still, being her confidant these days it was impossible he could fail to be loyal and ask.

‘No,’ I answered.

I dreamed of change like any such child does. Wake up one day to find the horrors are gone, that the brittle sharp-edged ball of barbed wire has become a place of rationality, equality and calm in which it is safe to be oneself. But here in the now, the reality gripped my body with a sickening dread.

‘She’s changed, you know,’ said Tom referring to her drinking and violence now replaced more harmlessly with poker machines and bingo. ‘She’s mellowed out.’

But nothing could sell me on the idea. Her feelings for me as nemesis, owned object and confidante, back-to-back with the abuse she’d never publicly admit, didn’t have to be my baggage to carry, even if she was my mother. If she had changed, good luck to her, and I would truly celebrate such freedom from my safe distance knowing that she’d have changed for her own good and that was for her to own. But you can’t change what you’ve never owned up to, so there was no hope. In any case I needed no open invitation for a place in this ongoing soap with its emotional and psychological rollercoaster. Even if inspired by others to change, ultimately nobody changes for anybody else but themselves, and if they claim to, then it’s probably temporary suppression rather than real change or development. If the junkie gets clean, you don’t test them out by presenting them with drugs. I felt that mentally and emotionally, to her, whether she’d ever admit it or not, I was those drugs.

The plane landed in the tiny Asian island of Bali on the way. Ian held my sweaty hand to save me buzzing or floating off into AWOL as we shuffled our way through the sweaty crowd of airport chaos, collecting luggage, showing papers here and there, exchanging monies and being shuffled further along towards the door.

Outside of the door, the thick hot humid air wrapped me in, heavy against my skin. ‘Taxi, you want taxi?’ came the voices of short, dark, smiling men clad alternately in colourful sarongs and shorts with American sneakers.

We bundled into a taxi and rumbled down potholed roads, packed tightly up against our luggage, sucking in hot air in stifling, unairconditioned discomfort. Ian looked at me through his tinted lenses with wide boggledee eyes, and I looked back at him through mine as the taxi trundled us off into the unknown. We were heading to Ubud, by the monkey forest. It was two hours away.

The roads were lined with palm trees and wildly colourful plants. Brightly dressed people walked along the streets carrying baskets on their heads. Cane-woven baskets and bamboo cages lined the streets filled with chickens, fish, nuts and fruit. Emaciated stray dogs and cats sat or lay looking loyal on the front doorsteps of bamboo houses or ran out suddenly into traffic every so often. By sharp contrast, well-built clay villas with their intricately carved wooden doors had on their doorsteps ...

Table of contents

• Cover Page
• Other Books
• Title Page
• Copyright
• Dedication
• Foreword
• Everyday Heaven