Bearing Untold Stories - Life on (and off) the Autism Spectrum

By Helen Hughes

Autism.

You may have heard of it, but do you really know what it is? Can any of us, with confidence, say that we truly understand how autism impacts people and what we can do to offer positive support and recognition?

In this book, Occupational Therapist and Autism Consultant Helen Hughes, opens the doors to a

• Language: English
• Publisher: Begin-A-Book Independent Publishers
• Release date: Jun 14, 2023
• ISBN: 9781915353122

Helen Hughes

Helen Hughes is a senior lecturer in German and film studies at the University of Surrey. She is the author of Green Documentary (2014) and co-editor of Documentary and Disability (2017) and has published articles in journals and books on documentary, experimental, and German-language cinema.

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BEARING UNTOLD STORIES

Life on (and off) the Autism Spectrum

HELEN HUGHES

Copyright© 2023 by Helen Hughes.

All rights reserved.

No portion of this book may be reproduced in any form without written permission from the publisher or author, except as permitted by United Kingdom copyright law.

This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that neither the author nor the publisher is engaged in rendering legal, investment, accounting or other professional services.

While the publisher and author have used their best efforts in preparing this book, they make no representations or warranties with respect to the accuracy or completeness of the contents of this book and specifically disclaim any implied warranties of merchantability or fitness for a particular purpose. No warranty may be created or extended by sales representatives or written sales materials.

The advice and strategies contained herein may not be suitable for your situation. You should consult with a professional when appropriate. Neither the publisher nor the author shall be liable for any loss of profit or any other commercial damages, including but not limited to special, incidental, consequential, personal, or other damages.

Book Cover by AnnMarie Reynolds for begin a book Independent Publishers

First paperback edition 2023

ISBN (Print) 978-1-915353-11-5

ISBN (eBook) 978-1-915353-12-2

Published by begin a book Independent Publishers

www.beginabook.com

For Nathan and Talia, my own reasons for being and for

wanting to change the world for the better.

I love you.

There is no greater agony than bearing an untold story inside you.

Maya Angelou

"Think about what nobody has yet thought, about that which

everyone sees."

Erwin Schrodinger

BEARING UNTOLD STORIES

Life on (and off) the Autism Spectrum

HELEN HUGHES

Published by begin a book Independent Publishers

First edition June 2023

www.beginabook.com

[e-mail]

CONTENTS

SECTION 1 - The Unfolding Story of Autism

Chapter 1

Chapter 2

Chapter 3

SECTION 2 - Bearing Untold Stories

The Untold Stories

Theme One: Camouflaging and Coping

The Skins I Weave by Rebecca

Daydreaming by Bran

Stephanie Versus Shoelaces by Stephanie

Man of Steel by Shaun

Journey's End by Kevin

Theme Two: Me, Myself and I

Calling a Truce by Mark

The Right to Be Me by Cathy

Looking Back – Those First Few Years by Paul

An Autistic Acrostic by Anonymous

A Bit Odd by Paul

Blue Flask and Sandwiches by Pamela

Theme Three: Love and Community

‘He can’t have autism …’ by AnnMarie

Mr Smirnoff and the Velcro Gang by Steph

Wholes not Parts by Dr Rachel Taylor

When Hats are Life by Russ Williams

Palette by Susan

Glossary

SECTION 3 - Your Story

SECTION 4 - Going From Here

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Legacy

Acknowledgements and Thanks

Introduction

Autism

Asperger’s

Autism Spectrum Disorder

Neurodiversity

High/low functioning autism

Neurodivergence

Neurotypical

Autistic

Allistic

Have you heard about some of these?

In the last few years, the profile of autism has been raised exponentially by the media -in books, blog posts, podcasts, on social platforms and in the press. Celebrities are talking about their children being diagnosed with autism, or their own diagnoses as adults and what it has meant for them. This means there are quite a few textbooks and autobiographies out there focusing on autism – but this book is not one of those. This book is unique for several reasons and most importantly, this book tells the stories of many people experiencing life with autism.

In these stories they share what it has meant and continues to mean for them. There are also accounts from people whose lives are touched by autism in some way. In their own words and previously untold, these stories are written by people who live and experience a different kind of mind. These stories help us to understand how other people might see the world and appreciate diversity in all its beautiful forms. When we do this, we can potentially flourish in our own lives.

Inside this book you will meet a full spectrum of people, but all with one common need. The need to be heard, understood and accepted and the need for us to question stereotypes and assumptions which have been carried for far too long.

I hope you will be challenged by these stories. That they inspire you to question assumptions and beliefs you have consciously or sub-consciously made about autism. Perhaps you have considered those on the autism spectrum to be

‘disabled’, ‘different’ or ‘less’ and you might have chosen this book because you are interested to know and understand more about autism.

BUT, and this is key, this book is also about YOU.

In reading these untold stories, you may find that your assumptions and what you thought about the world changes – after all it is our own experiences which shape the way we think.

So, as well as learning more about autism and neurodivergence, I invite you on a journey of recognising and questioning what you have been told -to see how you understand the world, and the way you think about people who are perceived to be different.

***

As you read through this book you will begin to see how these untold stories show the reality of autism along with its spectrum of difference and individuality -in a way that has never been done before. You will understand how unique each and every individual is (including yourself) and see how we are all shaped and formed by our thoughts about the world and the people around us.

The stories you are about to read illustrate some important truths and may hold a mirror to your own experiences. Some of them are sardonic, ironic and amusing where others are insightful and sad. Some will make you smile; others will move you, but they will all, I hope, change you in some way.

Each and every story is from a real person. An authentic and brave telling of their life experiences and of uncovering their place in a world which often doesn’t understand them. The people behind the spectrum stories in this book are people like you and me. They are people who get up in the morning to face the challenges of the day. They hold their children’s hands and make their beds and grow older. They walk their dogs and feel the wind on their faces. They worry about pollution and how much money is left in the bank at the end of the month. They are mothers, fathers, siblings, children, workers, friends and lovers.

Only one of the people behind these stories is paid for the work they do; everyone else has shared their story because they have a passion to change the world, or because they love a person on the spectrum, or simply because it’s time for things to change and they need others to listen.

Some of these people also live a life that has been tricky and challenging and hard to figure out because after all, there is no manual on how to ‘human’. If no one has been able to explain why you feel so different, if it seems as though other people don’t understand you or that you feel as if you don’t fit in anywhere or your voice has gone unheard, then the world can feel like a damn hard place to endure.

The stories in this book are written by people I have known -people who have wonderful, authentic stories to tell -and every single one has changed the way I see myself and the world around me. By reading these untold stories I hope you will uncover parts of yourself too. I hope you will discover your own stories and understand that things might not be the same as you have always believed. I want you to read these stories, hear their author’s voices, and understand that we, all of us, are really not so ‘different’ after all.

***

How this book works:

The book is split into four distinct sections. You may want to read it from beginning to end, or you may want to jump directly to the parts that interest you the most.

The first section is all about autism – what we know, the history of how we have achieved our current understanding of it, and the difficulties someone with autism might face.

The second section contains those beautiful untold stories. They straddle the autism spectrum and are split into three categories: Camouflaging and Coping, Me, Myself and I and Love and Community.

Section three of the book is about your story, and by this I mean what your brain does and why you think in the way you do. This is the section that will encourage you to reflect and begin to gain a greater understanding of diversity. These reflections may start changing things in your life – hopefully in a positive way.

Finally, section four centres on practicalities -things like diagnostic assessments and what happens in them, and helpful strategies for people on the spectrum as well as for their parents and/or carers. I look at some of the day-to-day challenges and have provided ideas for reasonable adjustments and effective support. If you are a teacher or health worker or other professional working with adults and children on the spectrum, there are some suggestions and

ideas here for you too. I have also included my own thoughts on what we can all do to understand, support and empower people on the autism spectrum.

At the end of the book, you will find a list of suggested further reading plus details of national charities who can offer support and advice. So, all that being said – are you ready? Let’s go.

SECTION 1

The Unfolding Story of Autism

Chapter 1

At the Beginning, and Beyond Raymond Babbitt

This book as you will see, is all about stories. The stories of people on the autism spectrum, untold until now.

This book is also about your story; but for now, we are going to start right at the beginning of our journey with autism and illustrate why we are where we are today in our understanding of neurodiversity.

I have come to realise that stories are layers, each built upon the previous one which keeps going with twists, turns and surprises around every corner. Stories are living, changing things and they never end. This is certainly true of the story of autism. I am writing this book in the summer of 2022, in a post-pandemic world and around 79 years after the first paper on autism was published.

Depending on when you read this book the story may well have changed again. It may have grown and developed even more layers, but for now let’s go back to the beginning and understand why we are where we are today – both in our understanding of autism and neurodiversity as a whole.

Until fairly recently, very little was known or really understood about autism. It wasn’t until the late 1970’s/early 1980’s that research and work on understanding autism began to gather speed.

If you were to ask someone in the street what autism is, many people will still relate their perception and comprehension of it to stereotypes. Stereotypes that are perpetuated in the media and usually involve a geeky scientist or a tech nerd and are often male. People living through the 1980’s will have been heavily influenced by the very successful movie Rain Man. This 1988 film had huge commercial success and won a raft of awards. Starring Dustin Hoffman and Tom Cruise, Hoffman’s character, Raymond Babbitt, was based on the real-life story of a man with autism, Kim Peek. The influence of this film has meant that its portrayal of autism has remained in the public perception for the last 40 years or so. But is it accurate?

Some articles I have read suggest that the film delayed our understanding and grasp of neurodiversity (a term introduced by social scientist Judy Singer in 1998) and of maintaining the myth that people with autism are different to everyone else.

The narrative of ‘Rain Man’ could be considered to show that people with autism are disabled, complex, difficult to understand and communicate with, and that they see the world in a totally different way. The film also suggested that autistic people are brilliant with facts and figures and have an incredible memory, but lack in small talk and social skills, dictated to in no small part by their need to stick rigidly to routines. That of course is a sweeping generalisation, and one which this book will challenge.

In my job as an Occupational Therapist and Autism Specialist, I’ve worked with over two thousand people with autism over the last 15 years or so – as well as their families, friends, supporters and professional workers - and I have many friends on the autism spectrum. All I can say is that I have not yet met anyone like Raymond Babbitt.

Of course there are people with similar difficulties, but my point is best captured by this well-referenced quote:

If you’ve met one person with autism, you’ve met one person with autism. (Dr Stephen Shore).

Rain Man did its job in showing the existence of autism as well as raising its public profile (though bear in mind that Kim Peek had a genetic condition which caused a range of problems rather than simply autism), but it didn’t address the issue of individuality and the multi-dimensional spectrum of experience and being that autism really is. And it certainly didn’t help us to understand and embrace neurodiversity.

Inaccurate media portrayal over the years has had an impact on the public perception of autism, which means that autistic people are still not getting the appreciation and acceptance they need and deserve.

Let’s put that right.

***

So, what exactly is the story of autism?

To appreciate where we are today we need to take a short trip back in time and tell the story of two men who could be considered the ‘fathers’ of autism. Though we know that the autism journey began well before the 1920’s, these two men were largely responsible for spotlighting this condition in the way we understand it today.

Leo Kanner was a Ukrainian-born doctor who moved to the United States in late 1923. He had been working as a cardiologist and GP in Germany but became interested in neurology and psychiatry and was offered the opportunity to relocate his family to South Dakota, USA so that he could take up a post at a clinic there. At that time, patients who were thought to have potential mental health conditions were often kept in institutions or ‘hospitals for the feeble minded’ or were offered up as domestic servants to the wealthy. They were classed as ‘nature’s mistakes’, often sterilised against their will and asked to repeat strange phrases or count backwards in front of observing doctors. These doctors would then ‘vote’ on what might be wrong with these patients and prescribe strong and toxic medications which created greater psychological distress.

In those days, eugenics (the scientifically erroneous and immoral theory of racial improvement and planned breeding - National Human Genome Research