Lives with Autism

Steve Mee Dr

Description

What is autism really like? Academic literature often defines autism in a clinical, pathology-orientated way, whereas personal testimony can tell health and social care professionals how it feels. This book presents personal accounts from people whose lives have been touched by the day-to-day realities of autism: people with autism, professionals who interact with them, their parents and their siblings. The stories are mostly told 'straight', with brief introductory comments and a few reflections at the end of each chapter.As Autism Programme Leader at the University of Cumbria for the past 13 years, Steve Mee is uniquely placed to compile such a book. He has met, and befriended, many people with autism and their families. Through listening to their stories, he has had moments of profound challenge and insight. In this book, he shares these personal narratives and what he has learnt from them. Reading these accounts will enable professionals to develop a real understanding of what it is like to live with autism, in all its nuanced detail. This in turn can provide vital insights into the impact (both positive and negative) of professional interventions.

Sujets

• Memoir

Informations

• Publié par: M&K Publishing an imprint of M&K Update Ltd
• Date de parution: 11 août 2014
• Nombre de lectures: 0
• EAN13: 9781907830846
• Langue: English

Extrait

Other books from M&K include
Valuing People with a Learning Disability
ISBN: 9781905539666
The Occupational Therapy Handbook: Practice Education
ISBN: 9781905539758
The Primary Care Guide to Mental Health
ISBN: 9781905539109
Lives with Autism
Edited by Dr Steve Mee
Lives with Autism
Steve Mee
ISBN: 9781905539-84-0
First published 2014
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Any person who does any unauthorised act in relation to this publication may be liable to criminal prosecution and civil claims for damages.
British Library Catalogue in Publication Data
A catalogue record for this book is available from the British Library
Notice
Clinical practice and medical knowledge constantly evolve. Standard safety precautions must be followed, but, as knowledge is broadened by research, changes in practice, treatment and drug therapy may become necessary or appropriate. Readers must check the most current product information provided by the manufacturer of each drug to be administered and verify the dosages and correct administration, as well as contraindications. It is the responsibility of the practitioner, utilising the experience and knowledge of the patient, to determine dosages and the best treatment for each individual patient. Any brands mentioned in this book are as examples only and are not endorsed by the Publisher. Neither the publisher nor the authors assume any liability for any injury and/or damage to persons or property arising from this publication.
Disclaimer
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The Publisher
To contact M&K Publishing write to:
M&K Update Ltd · The Old Bakery · St. John’s Street · Keswick · Cumbria CA12 5AS
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[e-mail]
www.mkupdate.co.uk
Designed and typeset by Mary Blood
Printed in England by H&H Reeds Printers, Penrith
Contents
Acknowledgements
Introduction
Section 1: Three women getting on with their lives
1 A person with autism
Julia Clifford
2 An Asperger marriage
Gay Eastoe
3 A mother and person on the spectrum
Julia Pilkington
Section 2: Going through the education system
4 Four stories from the edge
Thomas Madar
5 A life violated… A life missing
Cornish
6 The lecturer and Cornish
Steve Mee
7 Surviving at schoo l
Christopher
8 Into university
Samuel
Section 3: From education to work
9 Looking for work – a job in itself
Richard
10 An Aspie’s apprenticeship in a county council
Richard
11 Andy and Tina’s story
Andy and Andy’s mother
Section 4: Mothers’ stories
12 A mother’s tale
Lois
13 A mother’s realisation of the importance of transition
Tracy Marie Duffy
14 Life, learning, and getting it wrong
KatyLou Thompson
15 A concrete thinker’s journey to Wonderland
Archita Basu
Section 5: Sisters, churches and nurses
16 A sibling’s tale
Amber Leigh
17 Welcoming difference: An act of faith
Caroline Henthorne
18 Reflections of a nurse
Austin Dorrity
Section 6: Conclusion
19 Reflections on these stories
Resources
Acknowledgements

To the people with autism who have opened my eyes to the possibility of there being another way to be.
To all the authors in this book, who have so generously given their stories, often at considerable cost to themselves. Some of them found sharing their stories a traumatic experience and yet they willingly took part.
To Kate Mee for interviewing for and co-writing two chapters.
To the people who told me a story of their experiences which was truly shocking. We are not able to include this chapter for legal reasons.
To the National Autistic Society for 14 years of partnership delivering our joint module, and for help in creating the environment in which many of these chapters were first written. Many individuals have made contributions, including Luke Beardon, Chris Barson, Steve Owens, Lynn Tidmarsh, Lorraine McCallister and Mandy Rutter. My apologies to anyone who has been inadvertently omitted.
The University of Cumbria continues to support staff by giving scholarly time. I could not have edited this book without that support.
To Mike Roberts (M&K Update Publishing) for commissioning the book, Kelly Davis for copy-editing, Mary Blood for her work on the design and Fliss Watts for proofreading.
To Hazel for her patience and willing ear.
Dedicated to Hazel and Kate
Introduction

“The thing about autism, if you suffer from it, is that you can’t tell the difference between yourself and someone who doesn’t. You can’t think any other way. You only have one perspective, and from your perspective you can’t tell that anything’s wrong. Other people say you’ve got it. You’re different. There’s something wrong with you. They give you this label. There’s nothing you can do about it. It doesn’t matter what your perceptions about yourself are; it’s other people who define you. I wouldn’t know I was autistic if people didn’t tell me I was. So it’s not what I think that’s important; it’s what other people think. No matter how much you hate it, no matter how much you try to change yourself, it doesn’t go away. It’s like the scars left by a hot iron brand; you can’t run and you can’t hide. You’re autistic and there is absolutely nothing you can do. You have no idea how soul crushing that is.”
This is how an 18-year-old A-level student, Christopher, sees his autism (his full account is in Chapter 7 of this book). There is something stark about the way he compares the ‘autism label’ to ‘the scars left by a hot iron’. He feels that being labelled in this way is like being branded and left with a lifelong scar. In the town where I live, convicted prisoners used to be branded so that they could be easily identified in the future. Likewise, slaves were branded to denote ownership. Christopher says this label has given him a lasting mark, from which he can’t run or hide.
He suggests that autism is not something he recognises in himself; rather it is something visited on him. Someone else has identified him as something he does not recognise. It is always there. He thinks there is nothing he can do about it. Other people determine what will be, and he feels helpless. It is not the autism that is a problem – it is the professionals who apply the label. It is not his own perception of self that defines him; it is the perceptions others have of him. He thinks he ‘suffers’ from autism and yet he does not think that there is anything ‘wrong’; he is just himself. This is a powerful description of alienation from self and others. This is Christopher’s story.
What is my story, as the person who has gathered together the personal accounts in this book? I am a neurotypical; nothing special, just another example of the majority of the population. We neurotypical professionals are trained to identify the ways in which those we label ‘autistic’ are pathologically different. We supposedly become ‘experts’ and receive a professional salary in return. Most of us try to do our best for our ‘clients’. Yet assessment, the procedure we are paid to carry out, feels like a scar from a hot iron to Christopher. It hurts him and perhaps others like him. Our actions have contributed to a deep sense of alienation. None of us have set out to have this effect, and yet it seems to have been the consequence of our actions – at least sometimes. On the other hand, all the parents who have written in this book say that getting the label for their child was a positive step. It is like negotiating a minefield. What are we to do?
As the Autism Programme Leader at the University of Cumbria, I have been engaged with autism for the past 13 years. During this time, there has been a rapid increase in the number of books and articles on the subject, reflecting a rapid growth in knowledge about autism. Yet, despite being familiar with the literature, I find that personal testimonies such as Christopher’s provide a different, more profound, understanding of what it really means. Academic literature can define autism in a way that is often clinical and pathology-orientated, whereas personal testimony can tell us, in vivid colours, what it is like . It can also give us an insight into how our interventions make people feel . This book offers a collection of narratives from people whose lives are touched by autism. The challenge for the practitioner is to listen deeply to what is being said.
All the chapters in this book contain personal accounts from people touched by autism. The stories are mostly told ‘straight’, with little added analysis. Three chapters offer reflections from professionals but for the rest it is for you, the reader, to carry out your own reflection and analysis. For me, these stories offer the chance to think and learn in a ‘slow-burn’ way.
Many of the authors describe professional practice that is damaging and misses the mark entirely. It might be argued that the narrative created by a professional is very different from, and sometimes even counter to, the narrative of a person living with autism. The accounts in this book offer readers the opportunity to engage with the viewpoi