Kate E. Reynolds - Sexuality and Severe Autism: A Practical Guide for Parents, Caregivers and Health Educators

SEXUALITY AND
SEVERE AUTISM

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SEXUALITY AND SEVERE AUTISM

A PRACTICAL GUIDE FOR PARENTS, CAREGIVERS AND HEALTH EDUCATORS

Kate E. Reynolds

Jessica Kingsley Publishers
London and Philadelphia

First published in 2014

by Jessica Kingsley Publishers

73 Collier Street

London N1 9BE, UK

and

400 Market Street, Suite

Philadelphia, PA 19106, USA

www.jkp.com

Copyright Kate E. Reynolds 2014

Front cover image source: Shutterstock. The cover image is for illustrative purposes only, and any person featuring is a model.

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, Saffron House, 610 Kirby Street, London EC1N 8TS. Applications for the copyright owners written permission to reproduce any part of this publication should be addressed to the publisher.

Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution.

Library of Congress Cataloging in Publication Data

Reynolds, Kate E.

Sexuality and severe autism : a practical guide for parents, caregivers and health educators / Kate E.

Reynolds.

pages cm

Includes bibliographical references and index.

ISBN 978-1-84905-327-3 (alk. paper)

1. Sex--Handbooks, manuals, etc. 2. Autism spectrum disorders--Handbooks, manuals, etc. I. Title.

HQ23.R496 2014

618.9285882--dc23

2013029391

British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library

ISBN 978 1 84905 327

eISBN 978 0 85700 666

Printed and bound in Great Britain

Here it is;

if only you were.

For my niece,

Amy Alexandra Reynolds,

24 February 1986 19 January 2013

With love and thanks to her parents, Marion and Graeme,

for shaping Amy into such a lovely young woman.

Acknowledgements

Many thanks to Jill Owen, head teacher, Chris Smith, ASD Coordinator, and Jodie Watts, Behaviour Analyst, of St Nicholas School, Chippenham, for sharing their knowledge and experiences.

Also thanks to Ingrid Lancaster-Gaye, head teacher, and Sarah Devine, PSHE Coordinator, at Rowdeford School, Rowdeford, Wiltshire. Sarahs input was invaluable.

Thanks to Sue Hatton and Fiona Speirs for their insights, experiences and time.

If only the world were full of David Stewarts! Thanks to the head teacher of Oak Field School in Nottingham.

The JKP team deserve a mention, particularly Maya Barahona, who suffered my video gaffes, and Lucy Buckroyd, who answered whatever inane questions I asked.

With thanks to the following members of staff at The Manor School in Melksham, which my son attends: class teachers Kerry Wootton and Emma Shires; teaching assistants Carolyn Britten, Amanda Fordham, Jo Holdway, Debbie Lanc, Aaron McCaldon, Linda Mence, Aileen Rich and Marie Vincent.

I also wish to thank Rachel Crowder, whose happy demeanour and warmth make her a pleasure to be around.

Many thanks to Bridget Collins, teacher, Emma Howe, student support, and Joy Whitehead, school matron, who have supported my daughter so well in Sheldon School, Chippenham.

Also love to my parents, Sandra and Peter Reynolds, who lost their first grandchild in Amy.

Finally, nothings complete without my two children, Francesca and Jude.

Preface

My ten-year-old son is a source of constant worry to me. Having been diagnosed as having severe end autism disorder (classic/childhood autism), he has progressed to what might be termed moderate autism with a continuing severe speech delay. However, his social awareness, ability to locate and communicate feelings, and his functioning in the social world, all still show huge deficits.

As Ill outline in this book, our autistic children (and others with learning difficulties) feature disproportionately highly in figures for being the subject of sexual abuse and being abusers. The former is largely because we traditionally cosset such youngsters, believing misguidedly that we are protecting them, whereas we are leaving them vulnerable. The latter hinges on teaching our children through explicit methods and modelling the basic rules around growing up, appropriate public and private behaviours, sense of self and sense of others, appropriate touch and other factors.

We never know how much our children will develop in the long term. Autistic children hanker for routine and learn at this early stage routines that may be difficult or impossible to shift in older years. What we do today will affect their chances of developing more tomorrow. This book is for those with severely autistic young children, seeking guidance about sexuality, when to introduce the subject, what to say and how to say it. It is also for the many parents whose children are now adults and who are experiencing specific difficulties with their behaviours.

Being an autism parent can be isolating and depressing. It affects our social and family contacts and can leave us feeling imprisoned in our own homes because of our childrens behaviours. We can feel constantly under attack for how we manage our children, especially in public. Our society does not readily accept difference, particularly in the case of sexual behaviours. This book will give you proactive strategies to tackle your childs behaviours.

Most information and research I use is based on people with learning disabilities or difficulties (debate continues about which of these is a more appropriate term). There is little literature about the severe end of the autism spectrum specifically and scant information for parents about sexuality and severe autism.

Every family is different in terms of belief systems, cultural, religious and other factors. Parenting styles and personalities also differ and directly affect a childs upbringing. Family situation, such as sole/single parenthood and whether or not there are siblings, will have a bearing on parental choices and decisions. All these influences create a complex set of issues within any family. This book cannot give answers to every familys needs. What I seek to do is to give a broad hearing to the dominant issues surrounding sexuality and severe autism and offer strategies and practical advice to address these.