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A painful gift: the journey of a soul with autism

30 November, 1999

Out of the fire of his own autistic torment, Christopher Goodchild has produced this beautiful and inspiring book full of profound life-giving wisdom.  140 pp. To purchase this book online, go www.dltbooks.com Love in action is a harsh and dreadful thing compared with love in dreams.Fyodor Dostoyevsky FOREWORD A painful gifta book that wounds and […]

Out of the fire of his own autistic torment, Christopher Goodchild has produced this beautiful and inspiring book full of profound life-giving wisdom. 

140 pp. To purchase this book online, go www.dltbooks.com

Love in action is a harsh and dreadful thing compared with love in dreams.
Fyodor Dostoyevsky

FOREWORD

A painful gift
a book that wounds and reveals.

The story of a gentle man
who is constantly lost
yet found.

Lost,
because he never knew
he was sick with autism.
But found,
when it was diagnosed many years on.

It was no longer then a sickness
but part of his being.
A way of life
his way of life
and of relating or of fleeing relationships.

Found and lost through relationships found by Jesus
and by Daniel, his beloved son.

A moving, deeply moving story
that can reveal our woundedness but also our hope
how quickly we judge through the prism of our fears and wounds.
Yet found by Jesus
who is always there – but so often silent.

Our hope.

Jean Vanier
November 2008

 


 INTRODUCTION

Your joy is your sorrow unmasked.
Kahlil Gibran

As far back as I can remember, I recall a deep longing to enter into the unity of all things, and to connect deeply with the world around me. I ached not only to feel the sun on my face, the wind in my hair, and the smell of the garden in springtime – I longed to be one with them. It seemed mysterious to me then that the very things that brought me such joy would also bring me such pain. The sun and wind would bring blisters to my face, the may blossom would make my nose run and my eyes swell, and the kaleidoscope of colours would dazzle my eyes. It seemed I ached for what I could not bear.

When it came to the social world, I felt like a bewildered stranger, often drowning in a tidal wave of sensation. People, places and things would melt and blend like a surrealist painting. Words and sounds would scream at me and then like magic somehow melt away. Everything seemed transcendent and immanent all at once.

Welcome to my world. I have autism.

However, this book is not so much about my autism, but about the struggle to be truly myself in the world. To be fully human, to touch people and to be touched by people in return. As the Cistercian monk Thomas Merton once said, ‘To be a saint is to be truly oneself.’

As a Christian I have always held a deep affinity with Jesus. When I first thought of writing my story, the Stations of the Cross offered me not only a useful structure for outlining my life with Asperger’s syndrome, but also powerful imagery to accompany people along the journey that led to my diagnosis in the summer of 2007. For those unfamiliar with the Stations of the Cross, they represent points along the way of Jesus’ last moments of his life, covering his trial, sentencing, crucifixion and resurrection and the people who came into contact with him at that time.

Asperger’s syndrome is a high-functioning form of autism and falls within the autistic spectrum. It was first identified over fifty years ago by Hans Asperger, a Viennese paediatrician. I was in my early forties when I was formally diagnosed with it. The reason such an understanding of myself evaded me for so long will become clear as my story unfolds. In my story, I describe the life I led, unaware of my difference, and also my struggles with depression living in this ‘cloud of unknowing’ until my diagnosis, then I end with a reflection on how my outlook on life has subsequently changed so radically.

One way to describe a person with autism is someone who comes not from another planet, but rather from a different culture and who has a different way of perceiving our world.Autism is a blessing, a gifted way of seeing the world. It is also deeply misunderstood. There is much talk today of finding a cure for autism, and even if that is remotely possible, I would have no interest in such cures, for the simple reason that there IS nothing wrong with me that needs curing. If anybody needs an immunising injection to shield against the crippling effects of their general predisposition, it is those who feel the need to fix individuals, societies, or whole cultures. For it is the inability to accept difference that cries out to be remedied.

However, although I regard autism as a gift, it can be a painful gift in many ways. Even producing this book has been painful, since writing has always been a distressing and uncomfortable experience for me because of my autism and dyslexia. It was an enormous strain physically, mentally and emotionally, so I regard the publication of this book as being a miracle in itself.

When I had nearly finished writing my story, and I realised that what I was writing might possibly find its way into the public domain, I became aware of the temptation to dampen down and sanitise the darker moments of my journey in order to make them more palatable to others. I resisted this temptation for the most part, because I felt called to share my woundedness in full, so that others might be strengthened in the process of bringing to light their woundedness too.
My deepest prayer is that all who read this book, including my son, if he so wishes when he comes of age, will be inspired to see that, as was the case in my story, it is often that which gives us the deepest sorrow in life that can bring us the greatest joy. It is for this reason that my book is dedicated to my son, because, despite all the difficulties regarding managing myself when I was with him in the early years, the times I spent with him were, and will remain, the greatest and most joy-filled moments of my entire life.

Above all my son has taught me that great love and great suffering are part of the spiritual journey, and that it is only through great love and great suffering that human beings can be transformed, for it is, I believe, in my poverty and in my joy God resides. The fact that love and joy bring me such intense pain can only truly be understood by travelling deeply into my inner landscape.

… We are put on earth a little space
That we may learn to bear the beams of love
.
William Blake


STATION ONE:

CONDEMNED

Jesus. How hard it is for me to be condemned, not by
my difference, but by the world’s indifference to my way
of being that seems not of this world.

I was adopted at the age of six weeks from the Crusade of Rescue, which was a Catholic home for destitute mothers and their children. My adoptive parents came from working-class families and both grew up in North London during the Second World War. I had a sister, who was also adopted from the Crusade of Rescue; she was two years older than me. She was clearly different from me – she was talkative, I was quiet and learnt to talk later than the average child. In childhood photographs my sister is always beaming, but I have no trace of a smile. How to perform such a feat seemed totally beyond me.

When I was able to crawl I would struggle for dear life to be away from family members, only to be picked up and returned to them. Over and over again this painful ritual was re-enacted, painful because being held felt like what some people experience when they scrape their fingernails down a blackboard. The more I resisted my mother’s attempts to cuddle me, the more she persisted. I soon realised the wisdom that comes with acceptance and in the end gave in to my mother’s need to hold me, over my need to be away from her. It must have been hard for my mother to experience this rejection from me.

My earliest memories were of a world that felt totally overwhelming. Lights, sounds, movements and smells flooded into my senses, leaving me feeling distressed and anxious. For me it made perfect sense to remove myself from all social interaction. This way I felt safe from a world that was strange and alien to me, and the more I ventured out into the world the more I wanted to retreat from it. I soon learned that whenever I was able to shut my bedroom door behind me, all my problems just seemed to magically evaporate. How wonderful! What bliss!

One of my greatest difficulties was in understanding what people were saying to me, as everything was so confusing. I recall working tirelessly from an early age, creating sophisticated ways of communicating in order to cope. I built entire systems in my imagination – my brain was like a library filled with images and words. However, in order to gain access to this ‘library’, I needed more time than the world allowed. Only in isolation could the conditions be created whereby my system of thinking would operate.

I remember, around the age of three or four, being given one of those objects which was filled with water and which, when shaken, would make snowflakes swirl around in some scene or other. I was fascinated by this object – it seemed so much like me with all that frantic swirling movement going on while the main character remained so visibly unaffected within the hermetically sealed container. I would love the fact that I had complete control over the movement of the snow, and I loved the way the soft white flakes fell so gently to the ground. I saw myself as a snowflake and my parents as hard rocks that I would fall against and then melt. I ached for them to be snow like me, so we could be held together, held together in a field of snow.

Beyond the place of right and wrong, there is a field – I’ll meet you there.
Rumi

 

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