Ebook Multicoloured mayhem: Part 1

M U LT I C O L O U R E D M AY H E M


of related interest
Freaks, Geeks and Asperger Syndrome
A User Guide to Adolescence
Luke Jackson
ISBN 1 84310 098 3

A User Guide to the GF/CF Diet for Autism,
Asperger Syndrome and AD/HD
Luke Jackson
Foreword by Marilyn Le Breton
ISBN 1 84310 055 X

Asperger’s Syndrome
A Guide for Parents and Professionals
Tony Attwood
Foreword by Lorna Wing
ISBN 1 85302 249 9

Asperger Syndrome in Adolescence
Living with the Ups, the Downs and Things in Between
Edited by Liane Holliday Willey
Foreword by Luke Jackson
ISBN 1 84310 742 2

Reweaving the Autistic Tapestry
Autism, Asperger Syndrome and ADHD
Lisa Blakemore-Brown

ISBN 1 85302 748 0

Diet Intervention and Autism
Implementing the Gluten Free and Casein Free Diet
for Autistic Children and Adults: A Practical Guide for Parents
Marilyn Le Breton
Foreword by Rosemary Kessick, Allergy Induced Autism
ISBN 1 85302 935 1


M U LT I C O L O U R E D
MAYHEM
Parenting the many shades of adolescents
and children with autism,
Asperger Syndrome and AD/HD

Jacqui Jackson

Jessica Kingsley Publishers
London and New York


Extracts reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Text
Revision, Copyright © 2000 American Psychiatric Association.
Extract reproduced with permission from A Guide to Asperger Syndrome by Christopher Gillberg,
Copyright © 2002 Cambridge University Press.
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, 90 Tottenham Court
Road, London, England W1P 9HE. Applications for the copyright owner’s 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.
The right of Jacqui Jackson to be identified as author of this work has been asserted by her in
accordance with the Copyright, Designs and Patents Act 1988.
First published in the United Kingdom in 2004
by Jessica Kingsley Publishers Ltd
116 Pentonville Road
London N1 9JB, England
and
29 West 35th Street, 10th fl.
New York, NY 10001-2299, USA
www.jkp.com
Copyright © Jacqui Jackson 2004
Second impression 2004
Library of Congress Cataloging in Publication Data

Jackson, Jacqui.
Multicoloured mayhem : parenting the many shades of adolescents and children with autism, Asperger
syndrome, and AD/HD / Jacqui Jackson.-- 1st American pbk. ed.
p. cm.
Includes bibliographical references.
ISBN 1-84310-171-8 (pbk.)
1. Autistic children--Care. 2. Autistic children--Family relationships. 3. Asperger's
syndrome--Patients--Family relationships. 4. Attention-deficit hyperactivity disorder--Patients--Care. 5.
Developmentally disabled children--Care. 6. Parents of autistic children. 7. Parenting. I. Title.
RJ506.A9J325 2004

649'.154--dc22
2004001110

British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN 1 84310 171 8
Printed and Bound in Great Britain by
Athenaeum Press, Gateshead, Tyne and Wear


CONTENTS

ACKNOWLEDGEMENTS

1. Introduction 13
2. Meet the Jacksons 18
3. An Autism Cocktail 24
An extra splash of colour 25
Causes of autism 38
The autism detective 40
The overlap between AD/HD and autism 41
A colourful tapestry 42

4. Autism 49
A bit more about Ben 49
A diagnosis of autism 52
School 62
Routine and change 64
Therapies and interventions 66

5. Attention Deficit, Hyperactivity Disorder (AD/HD) 74
...and now a bit more about Joe ! 74
Does my child have AD/HD? 75
Parenting an AD/HD child 84
School and AD/HD 89
Interventions 93


6. Asperger Syndrome 103
Asperger Syndrome – a ‘mild’ form of autism 104
Awaiting a diagnosis 105
Asperger Syndrome in the family 106
Running an ‘emulator’ 115
Asperger Syndrome in adolescence 120
Different is cool 123

7. Family Fun 126
An unseen guest 127
…and a few more visitors! 129
Treasured memories 133
Large families 138
Food for thought 139

8. Sibling Situations 147
Sibling rivalry 148
Siblings of children with autism and AS 152
Siblings of children of AD/HD 155
Language difficulties and siblings 158
On the positive side 161

9. Adolescence 163
Teenage transformations 165
Avoiding conflict 175
Setting boundaries 177
Sex, drugs and rock and roll 179

10. Holidays: Coping with Change 183
Disney World diaries 185
A change is as good as a rest! 200
Travel tips 201
Disney advice 203


11. Put Safety First 205
Autism nightmares 205
A tribute to Emma-Jane 207
AD/HD hazards 211
Anxieties of Asperger Syndrome 213
Dangers of dyspraxia 217
Safety suggestions 220

12. The Parents’ Survival Guide 223
A time for everything 225
Count your blessings 226
Maintaining your own identity 227
Sleeping sickness 228
Survival skills 232

13. A Conclusion to the Chaos 237
Appendix: Diagnostic Criteria

(With apologies to those
of you like Luke who feel that either you
or your children are actually not ‘disordered’ at all!) 239
DSM-IV 315.4 – Diagnostic criteria for
Developmental Coordination Disorder (Dyspraxia) 239
DSM-IV 299.00 – Diagnostic criteria for Autistic Disorder 239
DSM-IV and DSM-IV 315.00 – Diagnostic criteria for
Reading Disorder (Dyslexia) 241
DSM-IV 299.80 – Diagnostic criteria for Asperger’s Disorder 241
Gillberg’s criteria for Asperger’s Disorder 242
DSM-IV 314.00 – Diagnostic criteria for
Attention-Deficit/Hyperactivity Disorder 243
USEFUL WEBSITES 246
RECOMMENDED READING 249
REFERENCES 250
INDEX 251


Thank you to all my family and friends for all
your patience and support whilst I have buried
myself in work and neglected you all!


A butterfly lights besides us like a sunbeam
and for a brief moment its glory and beauty
belong to our world
but then it flies on again,
and though we wish it could have stayed,
we feel lucky to have seen it.

Acknowledgements
I really must say thank you to some people because without them this
book would just not have been possible.
The most obvious, biggest and resounding THANK YOU goes to
all of the children. Remember all of you – you can do great things and
be whatever you want to be. I love you all:

• Matthew. Thank you for helping me with the little ones, for

being my friend, for being a caring big brother and for
making us all laugh. Be kind to yourself and remember that
you CAN do whatever you want to do.

• Rachel. Thank you for your love, sunshine, care and

support. Let your inner beauty shine as much as your outer,
have confidence in yourself and may all your dreams come
true.

• Sarah. Thank you for your honesty and integrity. Many

could learn a lot from it. You are truly beautiful in every
way. Keep hold of your ideals and don’t ever be swayed by
the ways of the world (somehow I think that is unlikely).

• Luke. Thank you for being my soul mate, my friend and a

light in the world. Always remember that ‘different is cool’

and the world is your oyster (figure that one out!).

• Anna. Thank you for helping, caring, supporting and

loving. Your smile lights up the day and your love, beauty
and zest for life are an inspiration. Hold on to your dreams
(even the chocolate testing!) and enjoy life to the full.

• Joseph. Thank you Joe for being so much fun and bringing
laughter to our world. Thank you for showing us all that
there is a different way of looking at things. By letting us

11


12

MULTICOLOURED MAYHEM

into your world, you have helped so many. Keep on
dancing Joe and light up the world.

• Ben. Thank you Ben for lighting up our lives. A ray of

sunshine and a spark of hope, you are teaching so many
and we have so much to learn. I am looking forward to the
day when you can tell all. Until then keep on fighting.

• Thank you to Dr Stevens for your support and for giving

me the chance to do my utmost to help the children in any
way I can.

• Thank you Dr Boissier for listening, caring and

acknowledging that parents know their children best.

• Thank you Mick Connelly for making a difference to

many. Though I seem to ‘go it alone’ your presence behind
me is my security.

• Thank you Sam for being my ‘bestest friend’. Your

strength, courage, fun (and tidiness!) are an inspiration to us
all. Here’s looking to a brighter future babe.

• Last but definitely not least – a big thank you to the

chatters gang. No one can ever understand the depth of
support, advice and friendship you have all given me. I can
never thank you all enough!


1

Introduction

It’s Friday night and it is a rare occasion…none of the teenagers are
going out and there are no ‘spare’ ones either. The house is filled with

laughter and all of us are on our hands and knees on the floor, giggling
hysterically. The reason? We are sniffing around to see where the smell
of poo is coming from! After each one of us has entered the ‘orange’
room (Ben insists on colour coding everything) and have baulked at
the smell that greets us, we decide to go on a hunt to find the offending
culprit. In all seriousness we set about our task, each one of us determined to beat the other and find the source of the foul smell first. After
a minute or so of sniffing, we all suddenly stop, look at each other on
all fours, noses to the ground, and collapse into fits of laughter. One
thing about the Jackson household…life is never boring!
Don’t get me wrong. Life is hard and I get tired, depressed and
bored despite having so much to do, but all in all if I am asked to
describe my life then ‘fun’ is definitely the right word. How many
people are lucky enough to be an integral part of so many personalities, so many perspectives and so many differences? How many people
get treated to a hilarious rendition of ‘Slim Shady’ or get to watch such
an entertaining version of the ‘moonwalk’ at 3am? I truly am blessed.

13


14

MULTICOLOURED MAYHEM

When I meet people for the first time I often silently mouth to
myself their next few sentences. I am invariably right. Those of you
with large families will, I am sure, be able to tell me the next few sentences without even looking. “Goodness, how do you cope?” This is
usually followed by questions about how I stay so slim when I have
had seven children, closely followed by a ‘joke’ about whether or not I
had a television or if I have found out what causes it yet. In fact if
anyone is thinking those exact same thoughts now, I will get my

answers over and done with: Yes I do know what causes it. Yes I did
have a television. If you met Joe and Ben you would know exactly why
I stay so slim, and I cope, not only because I have no choice in the
matter, but mostly because we have fun. It may be different to the
‘norm’ but most definitely just as much, if not more, fun. There. That
gets the formalities out of the way!
When I was asked to write a book about life in the Jackson household, my first response was to question why on earth anyone would be
interested in us…after all we are just an ordinary family – well to us at
least! On reflection however I stopped to consider how things must
look from the outside. Most of the time I am too wrapped up in the
hilarity of dealing with such a chaotic blend of ages and abilities to
even contemplate how we seem to others, but occasionally I do sit
back and think what crazy conversations go on between the children
and notice that mayhem really is an accepted part of this multicoloured household.
With three girls and four boys ranging from the ages of six to
nineteen, life is bound to be rather hectic. However in our house we
have the added complication of the fact that each one of the boys has a
different shade of an autistic spectrum ‘disorder’ (I prefer to call them
differences). I therefore decided that maybe by writing about life in
the Jackson household, I can not only advise parents and carers and let
them know, at the least, that they are not alone, but I can also give
insight to professionals and extended family members and let them
realize that families such as mine may not be quite the same as the
‘norm’, but are no less ‘normal’ than any other household…merely


INTRODUCTION

15

different. By opening up our lives in the pages of this book, I hope to
carry on Luke’s message that ‘different is cool’.
I have aimed to write in such a way that you will be able to dip into
the book and gain advice that is relevant to your child, family and particular situation – a few mini books in one I guess!
As I actually sat down to write and think about how I could help
other parents, my mind was a whirlpool of thoughts about each of the
children, their combination of ‘disorders’, different therapies and
interventions, amusing anecdotes and words of encouragement.
However there is no smooth and flowing way of writing about such a
hotchpotch of ages, abilities and ‘disorders’…life in the Jackson
household just doesn’t flow smoothly – rather it hurtles along like
waters rushing for the rapids. Life swirls and spins in a stream of chaos
before silently moving on to tumble down the next waterfall. Therefore if this book seems disjointed at times and jumps from one topic to
another then please bear with me. Those of you with a multicoloured
household will know that that is how life is (and those of you who
have somewhat calmer lives – please read on and see how the other
half lives!).
As I sit, listen and give advice whilst one of the girls goes through a
teenage crisis, the moment is invariably interrupted by pandemonium
when either Joe or Ben hurtles past and demands attention. As I
prepare for a dignified (OK – so rather unrealistic!) family Sunday
dinner, it soon loses its dignity and degenerates into a moment of
mayhem as one of the dyspraxic boys leans across and knocks food all
over the floor. The ‘domino effect’ extends into every area of life when
there is more than one child around and in a multicoloured household
of such different personalities and needs, this is even greater.
Learning about autism and all its related ‘conditions’ is an essential
part of the life of any parent, carer, teacher or professional dealing
with someone with autism and if I can help in any small way towards
making the life of either the child, parent or carer any easier I will be

pleased. If I can give an insight to professionals and sceptical family
members and make them understand that to have a label such as
Asperger Syndrome, AD/HD, autism, dyspraxia or indeed any other


16

MULTICOLOURED MAYHEM

colour of the autistic spectrum is not to carry a stigma but merely to
provide an insight into the way someone’s mind works, I will be
ecstatic. In an ideal world, difference will be readily accepted in
schools, in the workforce and by professionals in all fields. In an ideal
world the education authorities, health professionals and social
services will all work together with parents in an attempt to provide
support for our unique children and their families. Until then all of us
can only work hard to raise happy, healthy children whilst raising
awareness at the same time.
For those of you who are parents of a child anywhere on the
autistic spectrum, wherever you are on your colourful journey, I truly
hope that by opening up my family life I may help you to realize that
whilst parenting a child with such differences can often be lonely and
disheartening, it can also be rewarding, worthwhile and highly entertaining. I hope that this book may bring you inspiration and provide
comfort in the fact that I am not Superwoman – if I can do it – so too
can you! Never lose sight of the fact that you are the professional when
it comes to your child. You know your children and their needs better
than anyone.
If there are any professionals reading this, then first can I thank
you for doing so. I pray that reading life from a parent’s perspective
may help you to realize that children with any autistic spectrum ‘difference’ can still lead fulfilling and joyful lives and our struggle to

achieve this is why we, as parents, often seem to be pains in the butts!
We are aware of budgets and your need to prioritize; we are aware of
your desire to err on the side of caution or leave things to see how they
pan out before you give a final diagnosis. For us parents and for our
children however, every day is precious. Every day matters. Each day at
school without the right support creates an added trauma not only to
the child but to the whole family. Each day without a diagnosis when
it is needed in order to access support, is a day in which parents are left
wondering and worrying. As professionals, you can help our children
most by listening to us as parents, by taking us seriously and by accepting that we know our children and what is best for them. We are not


INTRODUCTION

17

paranoid or over-protective. All we ask is that you work with us and
with each other.
Well, now I have issued my summit speech, and explained exactly
why I am writing this book, I will climb off my soapbox and introduce
you to my family.


2

Meet the Jacksons

Meet the Jacksons

Ladies and gentlemen – let me introduce to you the Jacksons. Full of

fun and laughter, trials and tribulations, chaos and catastrophes – we
could never be described as dull.
There is one word which sums up the Jackson household perfectly
and that is ‘chaotic’. Parenting in itself is no easy task, but when you
18


MEET THE JACKSONS

19

have adolescents, pre-adolescents and many shades of the autistic
spectrum all under one roof, then life can certainly be…colourful!
I have seven children, all very special, all very much loved and all
very different – seven different colours of the rainbow. There are four
boys and three girls; the boys all being various colours of the autistic
spectrum. In our house we have dyslexia, dyspraxia, Asperger
Syndrome (AS), Attention Deficit, Hyperactivity Disorder (AD/HD),
Sensory Integration Dysfunction (SID) and autism to add that extra
‘oomph’ to an already manic family.
Matthew, at nineteen years old, is at the stage where he is trying to
decide what to do with his life. He is a sergeant in charge of Marine
Cadets, has achieved his bronze and silver Duke of Edinburgh Award
and is well on the way to getting his gold. He holds first aid certificates, GCSEs, has completed a pre-uniform course which gives him
the equivalent of three A levels, and is living proof that dyslexia and
dyspraxia don’t need to prevent someone from achieving, either physically or academically.
Rachel is seventeen and is, in many ways, the opposite to Luke. She
loves to have people around her, likes nothing better than to chat
about trivia with her friends and her appearance is extremely important to her. She has a passion for the most up-to-date designer clothes
and is stunningly beautiful. In fact she manages to come downstairs

every morning looking as if she has just stepped out of a magazine.
Needless to say, endless streams of admirers are also added extras in
the Jackson household! Though multi-talented and an excellent singer
and writer, Rachel’s greatest strength is in art. She has astounding
talent and it seems to be a foregone conclusion that she will carry on to
art college after her A levels and pursue a career using her artistic flair.
Sarah is nearly sixteen years old and can only be described as ‘an
individual’. Like her sisters, she too is truly beautiful. She has an
honesty/bluntness that can only be applauded and is self-assured and
confident in a quiet unassuming way. Sarah has the organization and
self-discipline that the rest of us don’t seem to possess and is quietly
working her way towards her GCSEs with the promise of excellent
results. Like Rachel, Sarah is a gifted artist, producing some amazing


20

MULTICOLOURED MAYHEM

pieces of work. Sarah’s main talent, however, is in languages. She is
convinced that she is going to use her talent with languages in her
career and I have no doubt at all that she will. When Sarah sets her
mind to doing something, she always follows it through.
Next, meet Luke (if you have not already done so). Luke is fourteen
years old and has Asperger Syndrome and dyspraxia. He has written
two books now and is well on the way to finishing his third. His
second book, Freaks, Geeks and Asperger Syndrome, tells of Luke’s perspective on life, Asperger Syndrome and the difficulties of adolescence. Luke’s main passion is computers. Over his life Luke has had
‘obsessions’ that have come and gone, some lasting for quite some
time, some disappearing as quickly as they developed. One thing he
has been consistent with however is his love of technology. He states in

no uncertain terms that he will have a career working with computers,
probably web design. I am sure he will. One of the positives of
Asperger Syndrome is perseverance.
Anna is thirteen years old and is very much like Rachel. In fact
Anna aspires to be all that Rachel is! She is beautiful and popular and
likes nothing better than to sit for hours chatting to her friends on the
phone. Anna and Sarah both love to dance and spend hours working
out dance routines. Like Rachel and Sarah, Anna is a talented artist.
Her main talent however is for creative writing and in particular,
poetry. As you can see, I have included at the end of this chapter the
full poem that Anna wrote to end a documentary called My Family and
Autism, made by the BBC about our family recently. This probably
describes us all as well, if not better than I can.
Joseph is ten years old. Now how can I describe Joe? Joe is lovable,
funny and creative. Joe has severe AD/HD plus many added extras.
Life around Joe is never boring. If I could think of an ideal job for Joe it
would be an entertainer. He takes the limelight and dances, sings and
makes people laugh everywhere he goes. Despite being wildly hyperactive, like anyone with AD/HD, Joe ‘hyperfocuses’ and the subject of
this immense concentration to the exclusion of all else is his drawing.
Joe draws the most impressively detailed pictures, all from cartoons
and computer games. He has just started writing short stories which


MEET THE JACKSONS

21

give amazing insight into his mind and I have no doubt that Joe will go
on to do great things if he gets the support that he deserves.
Ben is six years old and is autistic. He was initially on the severe

end of the spectrum, non verbal and totally engrossed in his own silent
world. He too has many added extras and never ceases to amaze me
and all the professionals who have and are working with him. Diagnosed originally with cerebral palsy, Ben didn’t walk till he was over
four years old but yet now he spins around kicking and flailing his
arms and legs around in a bid to copy our Taekwondo moves. He
didn’t talk at all till he was nearing five but yet now he chatters away
constantly. Strangely enough, Ben is now extremely hyperactive with
very poor concentration for anything other than the computer – a
turnaround from a non verbal, virtually immobile child who sat for
hours doing nothing other than line up pegs and cars and a testimony
to the fact that autism is nothing if not unpredictable. The happiest
child I have ever come across, Ben never fails to bring a smile to the
face of anyone he meets. One day I sincerely hope that Ben will be able
to tell his story for himself !
I suppose I had better say a little about myself. Married at a young
age, the children and their difficulties were totally absorbing and I
considered them to be my ‘job’ in much the same way as my husband
had his. To me, maybe unfairly, I was always a single parent in my
mind, and divorce was inevitable and eventually became a reality.
Although I have spent numerous years studying and gaining many
qualifications and although I work hard to raise awareness of autism,
Asperger Syndrome, AD/HD and related conditions, I am primarily a
mother wanting the very best for her children.
Now that I have introduced the children in my own way, here is
Anna’s poem. I think she may actually describe us all far more succinctly than I have!


22

MULTICOLOURED MAYHEM

Meet the Jacksons
(a poem by Anna)
My name is Anna Jackson.
It is an ordinary name.
I have four ordinary brothers.
One of which has fame.
(Well not really but he does write books)
I live an ordinary life
In a pretty ordinary place,
I have a super mum though,
She’s the one who made me ace!
Mum cooks and cleans and stays up all night
My brothers they don’t sleep,
She does crazy dances and helps us all
And has a first class honours degree.
(Though I don’t know what that is?!)
Joe is quite hilarious
But very annoying too,
He pinches then destroys our stuff
And pees all over the loo!
(He does a great moonwalk though)
Luke is rather boring
He talks extremely slow
He’s written two books already
So he must be clever though.
Ben is so adorable
He refuses to wear clothes
He flaps his hands and likes to spin,
But I bet there’s loads he knows.

MEET THE JACKSONS

Matthew is so clumsy,
And also he can’t spell.
He jumps about and bosses us
But I think he does mean well.
My sister Rachel loves her clothes
She’s pretty as can be,
Of all the clothes she likes to wear
Her favourite’s Miss Sixty
Sarah’s very pretty too
Though moody as can be,
We dance together and have a laugh
And cook pasta and cheese for tea.
Well that’s all about the Jacksons,
Though there is one thing you should know
Remember always that Different is Cool
(that’s a quote from Luke’s book!)
And that I love them so!
Now here’s a final word though
Just in case we meet,
My name is Anna Jackson
And I’m the one who likes sweets!!

23


3

An Autism Cocktail

Add a liberal dose of autism, a pinch of Asperger Syndrome, a
generous helping of AD/HD and a dash of sensory and motor
problems to an already frantic family and one may be excused for
thinking that it would be a recipe for disaster! In fact the situation is
quite the opposite…it produces a taste of diversity, a zest for knowledge and a yearning for understanding.
Many people object to the use of a spectrum as an analogy to
define the many variations of autism. It is considered to be too two
dimensional. Too flat. Whilst many people prefer to speak of the
autistic landscape or continuum, I personally believe that no terminology can be fully accurate in describing the complexities of autism and
related differences and I like to think of a kaleidoscope of colour, so
the term ‘spectrum’ suits me. I love kaleidoscopes and the way a different picture is made with each twist. As the sun shines through my
bevelled windows, a myriad of different hues and colours are thrown
around the room and with one squint of the eye or a tilt of the head,
the whole appearance changes…just like my children. As I watch
them grow and develop, their assortment of mannerisms and physical
features, and the echoes of one another, of me and other relatives tease

24