Dr May Ng - A Journey with Brendan: Life with a child with autism, by a mother and paediatrician

A Journey
with Brendan

Life with a child with autism,

by a mother and paediatrician

Dr May Ng

Consultant Paediatrician and Paediatric Endocrinologist

MBBS FRCPCH FHEA MSc LLM PhD

First published in Great Britain in 2018 by

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Copyright 2018 Dr May Ng MBBS FRCPCH FHEA MSc LLM PhD

The right of Dr May Ng MBBS FRCPCH FHEA MSc LLM PhD to be identified as the author of this work has been asserted by her in accordance with the Copyright, Design and Patents Act 1988.

All rights reserved. No part of this publication may be reproduced, transmitted, or stored in a retrieval system, in any form or by any means, without permission in writing from the publisher, nor be otherwise circulated in any form of binding or cover other than that in which it is published and without a similar condition being imposed on the subsequent purchaser.

ISBN 9781912575800

British Library Cataloguing in Publication Data.

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

To Brendan

You are my inspiration and you have my heart

To my mummy and papa

Your unconditional love and encouragement has made me the person that I am today

To my son Darren and daughter Corinne

You have my endless love; be good and kind always

To my husband Eugene

Your love and support gives me strength

To my sister Audrey, brother Wai Tong, cousin Tien

I cherish the times we grew up side by side and the moments we still share

To the families and children with autism

You are not alone; patience, love and perseverance can overcome great difficulties

Endorsements

This inspiring, highly readable book by a parent who is also a doctor and a scientist is full of useful tips for other parents of a child with autism.

Professor Simon Baron-Cohen, Director of Autism Research Centre, Cambridge University

A mothers absorbing story of her son with autism is given perspective by her paediatric experience and medical knowledge. Dr May Ngs book will help many other affected families and also engage autism professionals.

Dame Stephanie Shirley CH DBE, entrepreneur and philanthropist (whose late son had autism)

Dr May Ngs account of her journey as an autism mum is honest, intelligent, helpful, real-world and illuminating.

David Mitchell, bestselling author and co-translator of The Reason I Jump and Fall Down 7 Times Get Up 8

This is a highly practical account of the difficulties faced with raising a child with autism. Despite being a paediatrician, Dr May Ngs account contains the struggles and unexpected challenges encountered in parenting; her practical advice will help others journey through what often feels like a complex and disorientating maze

Dr David Evans, Vice-President of Royal College of Paediatrics and Child Heath

This inspirational book is so easy to read and is highly informative. Dr May Ng documents her personal story with autism and includes advice and information based on her experience as well as on her research and medical knowledge. Whether you are a parent, carer, employer, teacher, SENCO, relative or a friend of someone with an autistic spectrum condition, this book will certainly help you to appreciate, understand and cope.

Anna Kennedy OBE, mother and autism campaigner

An incredible account by an outstanding mother, researcher paediatrician. The book is a gold-mine for parents and families living with autism

Dr Udi Mahamithawa, Consultant Community Paediatrician, Autism Specialist, Lancashire

Dr May Ng has written a must-read, full of information from her medical and personal experience describing her journey into the perilous world of parenting a child with autism

Emeritus Professor Michael Weindling, Paediatrician, University of Liverpool

Dr May Ng is positively masterful in sharing her personal story of living with autism from the perspective of a parent and a medical expert. Being privileged to be the Headteacher of Abbots Lea School and working with Brendan, I can certainly confirm that the key pieces of practical useful advice offered by Dr Ng to other parents are priceless in supporting children with autism to live happy, healthy and fulfilled lives. Highly recommended and inspiring book!

Ania Hildrey, Headteacher of Abbots Lea School, Liverpool Specialist School for Children on the Autism Spectrum

I wished I had a book like this when my son Alex was diagnosed with autism at the age of three. As a doctor and a mother living and breathing life with autism, Dr May Ngs book has such valuable advice and is a wealth of information for all families living with autism.

Christine Green, mother and former National Autistic Society Early Bird Programme trainer

Contents

Foreword

Autism is a lifelong disability that affects interactions with others and an individuals perception of the world. There is an impaired ability to communicate both verbally and non-verbally and this is what makes it so tough for parents. Having a child with a disability is hard for any parent, but it is particularly tough when that disability affects the ability of that child to relate in a way that a parent expects and when that disability is lifelong. And since communication between individuals is key to our humanity, that is what makes it so difficult to cope with. For a parent with a child who has such a problem, to put their feelings into writing is extremely challenging. But here is such an inspiring book. It has been written from the unique perspective of a consultant paediatrician who is also the mother of a remarkable child, Brendan, who has autism. Brendans mother, Dr May Ng has written this book in the hope that it will help to clear the fog of mystery and misinformation surrounding autism. It is a personal account of the effect that a remarkable child with autism has on an extraordinary family.

As a medical researcher, paediatrician and parent, May Ng has applied her professional skills to gain a deep understanding of what it means to have autism, its causes, current approaches to therapy and the best ways of enabling a child with autism to achieve full potential. She also gives insight into the complicated feelings of parents who have a child with autism.

Brendan is the eldest child of gifted parents. Both are extremely successful professionally, Brendans father is an orthopaedic surgeon and his mother is a paediatric endocrinologist. The senses of pain and loss felt when Brendans diagnosis was made were acutely felt by this family, as they would by any other. This is a moving account of a family coming to terms with the news of a diagnosis that will affect Brendan for the rest of his life.

When I first started to learn about children with autism in the 1970s, we were taught about a poorly understood condition first described by a Swiss psychiatrist Eugen Bleuler who coined the term after introducing schizophrenia in 1908. He used autism to describe the withdrawal from reality by people with schizophrenia. [1] Bleuler was a eugenicist and thankfully many of his ideas have not survived. It was 35 years later in 1943 that Leo Kanner usefully described autism as a distinct and separate condition [2], although the relationship between the conditions continues to be a matter of discussion [3]. There is still controversy about the causes of autism, and May Ng considers these in detail, and describes how she analysed them.