Jenny Lexhed - Love Is Not Enough: A Mothers Memoir of Autism, Madness, and Hope

To my dear mother-in-law, for all you have done for our son and our family. There are no words to do you justice.

Copyright 2008 by Jenny Lexhed

English-language translation copyright 2015 by Jenny Lexhed

All rights reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts in critical reviews or articles. All inquiries should be addressed to Arcade Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018.

First English-language Edition

The author has changed some names for reasons of privacy.

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Library of Congress Cataloging-in-Publication Data

Lexhed, Jenny, 1967

[Det rcker inte med krlek. English]

Love is not enough: a mothers memoir of autism, madness, and hope/Jenny Lexhed ; translated from the Swedish by Jennifer Hawkins.

pages cm

Translation of: Det rcker inte med krlek. Stockholm: Wahlstrm & Widstrand, [2008]

ISBN 978-1-62872-429-5 (alk. paper)ISBN 978-1-62872-471-4 (ebook) 1. Lexhed, Jenny, 1967 2. Mothers of autistic childrenSwedenBiography. 3. Autistic childrenSwedenBiography. I. Title.

RJ506.A9L49613 20115

618.92858820092dc23

[B] 2014035219

Cover design by Danielle Ceccolini

Cover photo: Thinkstock

Printed in the United States of America

CONTENTS

FOREWORD

All parents can empathize with anxiety over the risk of your child having a disorder. With being torn between wishing it were only your imagination and the persistent vague feeling in the pit of your stomach that wont be dispelled by reassurances. It may disappear for a while, but only to return when a new warning sign manifests itself.

In most cases, our fears are unfounded, but sometimes there is something that is not right. Love Is Not Enough is Jenny Lexheds story of the creeping suspicion that their first child, Lucas, is not like other children. She describes the reluctant, difficult movement toward a painful insight. The book isnt only a story about the search for the correct diagnosis or the best treatment. Its about a parents struggle to gain respect for her child from her community, despite all the diagnoses.

When I was at school to become a psychologist, knowledge in Sweden about autism was very limited, and the common hypothesis was that autism, in some vague manner, was caused by the parents inability to embrace and bond with their child. When I read Love Is Not Enough , I think about all the suspicion these parents were subjected to. Its painful to imagine the burden of guilt that must have been placed on them, not to mention the feelings of powerlessness and vulnerability.

Theories about autism are being developed constantly, even though many questions are still unanswered. Some professionals still harbor preconceived notions, but many of us have developed a more nuanced view. We dont lay the blame on the parents anymore. Most of us have realized that the parents need support, even if support alone is not enough. In addition, many therapists have realized that the parents must be closely involved for the therapy to be effective.

Its hard not to be drawn into Jenny Lexheds description of being lost in a forest of contradictory theories about autism and about the effectiveness of various treatment methods. For her, the never-ending hunt for knowledge led to a psychosis, which becomes understandable when youve followed her in her unrelenting efforts to comprehend, to put firm ground beneath her feet. Her weeks in the psychiatric ward are a nightmare in her account. Despite the fact that her depiction of her time there is free of anger and accusationsor maybe because of thisit becomes difficult to shy away from the huge shortcomings in psychiatry. The contrast between Jennys ambition to put her sons needs before her own and the inability of psychiatry to listen to Jennys own deep distress becomes heartrending.

Stories like this are critical for those of us who work in health care and education. They place the uniqueness of human existence at the forefront and increase our ability to empathize. That empathy is what gives us the power to develop treatments, support, and educational methods fitted to the needs of the individual patient and parent.

This is an important book, which can help other parents and families walking down similar paths. It will undoubtedly make it easier for them to find their way and help them feel a little less alone. And perhaps it will help them perceive the sunlight, even when things look very dark.

Per Naroskin,

psychologist and psychotherapist

PREFACE

TO THE ENGLISH-LANGUAGE EDITION

Love Is Not Enough is a bestseller in my home country, Sweden. It has been read by the mothers, fathers, relatives, and friends of people on the autism spectrum or with other disabilities, and by people going through a life crisis. But it has also been read by many others who simply treasure true-life stories.

I started writing because I wanted to put words to my feelings, to understand things better and make it possible to put hard times behind me. I took a writing class and received very positive feedback from my teachers, who encouraged me to publish my story. At first the thought frightened me, because I had really written from the heart and what I wrote is extremely frank and revealing. Would we want to share our life, our ups and downs with everyone else? Then I remembered that, when I first realized our son was different, it helped me a lot to meet other parents and hear about their experience. I figured sharing our story could possibly help others and maybe make their lives a little easier. So I decided to send the manuscript to several publishers, and three accepted it right away!

When the book was released, it received many positive reviews, and the media coverage was extensive. I was interviewed in newspapers and magazines, did radio interviews, and appeared on TV shows. From being reluctant to publish and share our story, I now had to face standing in the spotlight, which I wasnt used to and certainly hadnt desired. All of a sudden, I had to talk about having a son with autism and what it was like when I was committed to a hospital after suffering a psychotic breakdown caused by stress, exhaustion, and lack of sleep. This last part we had kept a secret, and only our close family knew. Writing the book, though, gave me the confidence I needed to stand up and acknowledge what had happened.

The fact that a few years had passed also made it easier. Our son was doing well, and I myself was leading a healthy life and working at our business. I wanted to show other people that it is possible to come back after going through tough times. The truth is, in the year 2001 I had an isolated psychosis due to a highly stressful life event in combination with a lack of sleep. Since then I have not had any relapses, and Im not on any medication. I know, though, how important it is to lead a balanced life, and I always see to it that I get enough sleep (sure, sometimes its less than it should be...), eat healthy, exercise, have time for myself and my friends, and most of all have time for my family. Having a loving family around me is a blessing.