A Strange World Autism Asperger s Syndrome And Pdd nos

by Martine F. Delfos

Author Martine F Delfos Isbn 9781843102557 File size 2MB Year 2005 Pages 416 Language English File format PDF Category Family and Friendship A Strange World is an intriguing and comprehensive guide to autistic spectrum disorders presented from a new scientific perspective Delfos s biopsychological model provides a strong theoretical analysis of the nature of autism and what problems it can cause She offers practical advice on how to approach these problems from the various perspectives of a

Publisher :

Author : Martine F. Delfos

ISBN : 9781843102557

Year : 2005

Language: English

File Size : 2MB

Category : Family and Friendship



A Strange World – Autism,
Asperger’s Syndrome and PDD-NOS

also by Martine F. Delfos
Children and Behavioural Problems
Anxiety, Aggression, Depression and ADHD – A Biopsychological
Model with Guidelines for Diagnostics and Treatment
ISBN 1 84310 196 3

of related interest
Asperger’s Syndrome
A Guide for Parents and Professionals

Tony Attwood
Foreword by Lorna Wing
ISBN 1 85302 577 1

Freaks, Geeks and Asperger Syndrome
A User Guide to Adolescence

Luke Jackson
Foreword by Tony Attwood
ISBN 1 84310 098 3

Understanding Autism Spectrum Disorders
Frequently Asked Questions

Diane Yapko
ISBN 1 84310 756 2

The Development of Autism
A Self-Regulatory Perspective

Thomas L. Whitman
ISBN 1 84310 735 X

Different Minds
Gifted Children with AD/HD, Asperger Syndrome, and
Other Learning Deficits

Deirdre V. Lovecky
ISBN 1 85302 964 5

A Strange World – Autism,
Asperger’s Syndrome
and PDD-NOS
A Guide for Parents, Partners,
Professional Carers, and People with ASDs

Martine F. Delfos
Foreword by Tony Attwood

Jessica Kingsley Publishers
London and Philadelphia

The author would like to thank the following publishers and authors for permission to reproduce copyright material:
American Psychiatric Association, Blackwell Publishing, Cambridge University Press, Developmental Medicine and Child
Neurology, Elsevier, The Endocrine Society, R.J. van der Gaag, M. Hadders-Algra, Johns Hopkins Medical Institutions,
Johns Hopkins University Press, The McGraw-Hill Companies, K. Momma, The Paedological Institute Amsterdam, T.
Peeters, Psychology Press, Random House, Axel Scheffer, Marita Schoonbeek, Simon & Schuster, Inc., Spectrum,
Springer, P. Steerneman, Swets and Zeitlinger, Therafin Corporation and P. Vermeulen.
Information about autism (pp. 365–6), Rett’s Syndrome (p.371) and disintegrative disorder (p.372) reprinted with
permission from the Diagnostic and Statistical Manual of Mental Disorders, Text Revision, copyright © American Psychiatric
Association 2000.
www.mdelfos.nl
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 W1T 4LP. 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 Martine F. Delfos 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 2001 in Dutch by Uitgeveij SWP, Amsterdam, as Een vreemde wereld:
Over autisme, het syndroom van Asperger en PDD-NOS. Voor ouders,
partners, hulpverleners en de mensen zelf.
First published in 2005
by Jessica Kingsley Publishers
116 Pentonville Road
London N1 9JB, UK
and
400 Market Street, Suite 400
Philadelphia, PA 19106, USA
www.jkp.com
Copyright © Martine F. Delfos 2005
Foreword copyright © Tony Attwood 2005
Library of Congress Cataloging in Publication Data
Delfos, Martine F.
[Vreemde wereld. English]
A strange world : autism, Asperger’s syndrome, and PDD-NOS : a guide for parents, partners, professional
careers, and people with ASDs / Martine F. Delfos ; foreword by Tony Attwood.
p. cm.
Includes bibliographical references (p. ) and indexes.
ISBN-13: 978-1-84310-255-7 (pbk.)
ISBN-10: 1-84310-255-2 (pbk.)
1. Autism. I. Title.
RC553.A88D4513 2005
616.85’882—dc22
2004025826
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN-13: 978 1 84310 255 7
ISBN-10: 1 84310 255 2
ISBN pdf eBook: 1 84642 089 X
Printed and Bound in Great Britain by
Athenaeum Press, Gateshead, Tyne and Wear

Contents
Foreword by Tony Attwood 11
Preface 13

Part 1: What is it?
1 Introduction 17
The first researchers 17; The structure of the book 20; Predisposition or upbringing 22;
Diagnosis or label 25; The strength and the weakness 27; The purpose of the book 28;
Focal points 29; Focal points regarding attitude 29

2 Predisposition or environment 31
Development from predisposition and environment 31; Visible versus non-visible 37;
Maturation 39; Common threads: Basic signs of disorders 46; Focal points 50; Focal points
regarding attitude 51; Summary 51

3 Differences between men and women 53
Man or woman, XY or XX 54; The self 56; Imagining what goes on in another
person’s mind 65; Moral development 73; Resistance to change 74; Self-reflection 76;
Capacity for action, anxiety and aggression 78; Gender differences and upbringing 79;
Schematic presentation 80; Consequences for autism 81; Focal points 81; Focal points
regarding attitude 82; Summary 82

4 Autistic disorders 84
The different forms 85; Social and emotional development 92; Classification of autistic
children 95; Prevalence of autistic disorders 97; Early detection 100; Focal points 102;
Focal points regarding attitude 103; Summary 103

5 The core of the problem 104
Social interaction 104; Unfeeling or being ‘stuck’ 106; Theories regarding autism 107;
Theory of mind (TOM) 108; Central coherence (CC) 111; Planning and executive function
(EF) 112; The socioscheme in relation to other theories 115; The socioscheme 116; The
socioscheme and the me–other differentiation 120; The socioscheme and time and space 121;
Memory 124; The socioscheme and identity 126; The socioscheme and theory of mind 127;
Eye for detail 131; Sensory experiences 141; Use of language 143; Striking interests 149;
Obsessive behaviour and rituals 151; Learning disorders and going to school 152; Focal
points 156; Focal points regarding attitude 158; Summary 159

Part 2: What can you do about it?
6 Before and after diagnosis 163
The disorder, but not the diagnosis 163; The diagnosis, but not the disorder 168;
Focal points 171; Focal points regarding attitude 171; Summary 172

7 Stimulating me–other differentiation and empathy 173
Inadequate me–other differentiation and symbiosis 174; Delayed development 176;
A strange world 181; Sensing or learning the rules 183; Developmental tasks 185;
A pre-schooler with the developmental task of a baby 187; Strange and familiar 192;
Strangers: Good and bad 195; Social intercourse 197; Focal points 198;
Focal points regarding attitude 198; Summary 199

8 Social skills 200
Social skills or ‘tricks’ 200; Eye contact 205; Lack of contact orientation 211;
Communication 217; The meaning of language 224; The meaning of jokes 228; Other
people’s limits 231; The firm foothold of proper manners 233; Training programmes for
social skills 235; Focal points 237; Focal points regarding attitude 238; Summary 239

9 Forming friendships and relationships 240
From egocentric behaviour to partnership behaviour 241; Primary school 243; Bullying
247; Self-image 250; Developing friendships 251; Deepening friendships into relationships
256; On the threshold of sexuality 258; Isolation and depression 259; The combination:
Empathic with autistic 260; A relationship: Learning from life itself 262; Focal points 265;
Focal points regarding attitude 266; Summary 266

10 Resistance to change 268
Change and unpredictability 268; Force of habit 272; Resistance to different foods 274;
Resistance resulting from hypersensitivity 276; Terrorizing or panicking 277;
Ritualized programmes 279; Associative and magical thinking 281; Allergic to ‘must’ 283;
Planning activities and keeping appointments 287; Punishment and reward 290;
The burnt-out family 294; Dealing with resistance to change 296; Focal points 298;
Focal points regarding attitude 300; Summary 301

11 Coping with anxiety and obsession 302
Anxiety as a basic motive 302; Anxiety and stress 303; Signs of anxiety 310; Preventing
anxiety 311; Forms of behaviour to reduce anxiety 319; Feelings of inferiority, jealousy and
depression 326; Focal points 328; Focal points regarding attitude 330; Summary 331

12 Coping with aggression 332
Aggression and sexuality 333; Autistic sources of aggression 335; Resistance to change 335;
Misunderstanding social interaction 340; Normal aggression 342; All alone in the world
343; Asking for help 344; Combination of autistic characteristics and ADHD 345; Focal
points 347; Focal points regarding attitude 348; Summary 348

13 Acquired social anxiety 350
Labelling anxiety through cognition 350; Medication or therapy 355;
Behaviour therapy 356; Depression 359; The strength of the parent 360;
Focal points 360; Focal points regarding attitude 361; Summary 361

14 Epilogue 363
APPENDIX I: DIAGNOSES 365
APPENDIX II: INTERNET ADDRESSES 379
APPENDIX IIA: SUMMARY OF KAREN WILLIAMS’ ARTICLE 383
APPENDIX III: BOOKS 385
REFERENCES 389
SUBJECT INDEX 410
AUTHOR INDEX 414

List of figures, tables and boxes
Figures
Figure 1.1
Figure 1.2
Figure 1.3
Figure 2.1
Figure 2.2
Figure 2.3
Figure 2.4
Figure 2.5
Figure 2.6
Figure 3.1
Figure 3.2
Figure 3.3
Figure 3.4
Figure 3.5
Figure 4.1
Figure 4.2
Figure 4.3
Figure 4.4
Figure 4.5
Figure 5.1
Figure 5.2
Figure 5.3
Figure 6.1
Figure 8.1

Figure 8.2
Figure 9.1
Figure 9.2
Figure 10.1
Figure 11.1
Figure 11.2
Figure 12.1

Hans Asperger
Leo Kanner
Disorders as a set of characteristics
Vygotsky’s zones of development
Cross-section and longitudinal section of the brain
Brain cells of neonate and adult
Brain cells of autistic and non-autistic people
Sleep cycles
Variable and non-variable motor functions
The 23 human chromosomes
The boy who ate salt, aged three and a half
Stammering and left-handedness
Amygdala and corpus callosum
Longitudinal section of the brain of a person with Asperger’s
syndrome
Piaget’s experiment concerning egocentricity
Columbus test, card 1
TOM test
Three types of children with autistic disorder, according to Wing
Graphic representation of people with an intellectual disability
and people with autism
The Sally-Ann test
Goose with exploding tummy
Cartoon of a man on the phone
Bruno Bettelheim
Morning curriculum at the PI school for intellectually disabled
children in Duivendrecht, the Netherlands, using drawings,
pictograms or words
Stimulating pretend play in a child with PDD-NOS
Example from an IQ test (Eysenck and Evans 1994)
Circular model based on Van Dijk
Drawing of the inside of a cathedral
Anxiety scheme 1
Anxiety scheme 2
Temple Grandin’s squeeze machine

18
18
24
34
40
41
41
44
49
54
57
68
73
76
93
94
95
96
97
110
129
134
165

227
236
244
258
281
307
309
338

Tables
Table 2.1
Table 2.2
Table 3.1
Table 3.2
Table 4.1
Table 5.1
Table 5.2
Table 5.3
Table 5.4
Table 5.5
Table 7.1
Table 9.1
Table 10.1
Table 11.1
Table 11.2

Differences between brain disorder and contact disorder
Basic signs of problems
Gender differences in incidence of disorders
Influences of high testosterone in the womb
Autistic and related disorders
The three most important theories and their core aspects
The socioscheme
Individuation process according to Mahler
Me–other differentiation as a building block for the socioscheme
Influences of high testosterone in the womb on the immune system
and development of the right hemisphere
Attachment and its translation into schemes
Development of friendships
Coping with resistance to change
Forms of danger
Ways in which autistic people cope with anxiety

37
50
58
81
86
108
119
120
130
157
189
252
297
304
328

Boxes
Box 2.1
Box 4.1
Box 5.1
Box AI.1
Box AI.2
Box AI.3
Box AI.4
Box AI.5
Box AI.6
Box AI.7
Box AI.8

Maturation disorders
Criteria for autism according to DSM-IV (APA 1994)
TEACCH: Steps in education for autistic people (Kunce and
Mesibov 1998)
Criteria for autism according to DSM-IV (APA 1994)
Characteristics of Asperger’s syndrome (Burgoine and Wing 1983;
Wing 2001)
Characteristics of Asperger’s syndrome (Gillberg and
Gillberg 1989)
Characteristics of Asperger’s syndrome
Criteria for Rett’s syndrome according to DSM-IV (APA 1994)
Criteria for disintegrative disorder according to DSM-IV
(APA 1994)
Criteria for McDD (Buitelaar and van der Gaag 1998)
Assets and deficits in the NLD profile (Volkmar and Klin 1998)

46
88
156
365
368
369
370
371
372
374
375

Foreword
Martine Delfos has written a book for the intelligent reader, explaining the strange
world of autism. She reviews each of the theoretical fields of study and then
describes our current landscape of knowledge as though from an observation
balloon to provide a single explanatory model for autism. The project has been
remarkably ambitious but the author has an encyclopaedic knowledge of the
academic literature and the various theoretical models, and extensive personal
experience as a clinician. The author also has notable respect for those who have
autism and Asperger’s Syndrome and she is able to challenge and change attitudes
as well as increase understanding.
The first part of the book explains the nature of autism from a theoretical
perspective while the second part provides a framework for the practical
application of our research knowledge. The author also includes quotations and
descriptions of individuals with autism that bring life and reality to the text. The
summaries at the end of each chapter ensure the reader can quickly access the key
points, which will be of considerable value to students studying autism. I suspect
that academics will now discuss and test the theoretical model proposed by
Martine Delfos, and clinicians will use Part 2 for guidance in the design of remedial
programmes. Parents and teachers who want to explore the strange world of autism
at a more intellectual level will appreciate the new perspective.
Tony Attwood
Author of Asperger’s Syndrome: A Guide for Parents and Professionals

11

Preface
It is quite a joy that this book has found its way into an English translation. The
Dutch edition proved to be very helpful in understanding autism and in helping
people with autism and their families; it also proved to be stimulating for research.
The book is intended for parents, partners and professional carers, as well as
for people with an autistic spectrum disorder. But the book is also intended for
scientific and educational purposes. The choice has been made to make the book as
readable as possible for a broad public; therefore references are included. However,
for the purpose of deepening insight and scientific purposes, the completely
original models (about autism and anxiety) have been elaborated in separate
appendices, with the appropriate references. These appendices can be downloaded from the following website: www.jkp.com/catalogue/book.php/isbn/
1-84310-255-2.
This book not only examines current theories about autism, it goes a step
further. A new model is presented which encompasses all the knowledge that is
available into a broad coherent whole. All aspects of autism, from a lack of sense of
time or obsessions, to not understanding jokes, are logically brought together here.
Examples from my psychotherapeutic practice are also used in the book. Not
only did I include examples from my work with those, often wonderful, people
with autism, but also their enriching comments on the way, which I used as
examples. I am very grateful to them. I cannot thank them by name, to protect their
privacy. But thank you!
My thoughts go especially back to the mother of Joe and her fight to give her child
the help he needed. She died before she could enjoy the fruits of her efforts. I carry
with me her struggle as a painful but valuable lesson.
I thank all those who helped me during the creation of this book and its
translation.
I am convinced that all scientific endeavour flourishes on the work of those
who went along the road before. Although this book has been written in the first
person, I wish to acknowledge those scientists whose work was the foundation for
further scientific insights. I am deeply indebted to Norman Geschwind and Hans
Asperger, who inspired me so profoundly. Without their work, it would not have
been possible to construct my models and I could not have accomplished this book.
Martine F. Delfos
Utrecht, 2004

13

People with autism need other people to
slow down
Martine F. Delfos

I am made of so much glass
That every harsh voice
Is a stone and a crack
Gerrit Achterberg

They say that I am rational,
that I should express my feelings,
but they want me to look there where
I’m blind
‘Martin’

Part 1

What is it?

1

Introduction

Is my child autistic, does he have a contact disorder or is he mainly struggling with
a lack of social skills? Is the child egoistic, does he show signs of a neglected
upbringing, or does he have autistic characteristics? There are many labels for the
various diagnoses surrounding autism, from autism in a ‘pure form’ to related disorders such as PDD-NOS. But what is autism and how can I help the child?
These are the questions that form the guidelines for this book. In this book we
will talk about the autistic spectrum, the group of disorders where the core problem
consists of having difficulty with (interpreting) social interaction.
Apart from interpreting social interaction there are many behaviours which
can play a part in autistic disorders and none of the theories have, up to now, been
able to place all the aspects in one overall explanatory model. This book aims to do
just that, so that behaviours such as ‘not understanding jokes’, the ‘need to keep
everything as it was’, and ‘resistance to change’ will become clear. The core concept
of the model presented in this book is the socioscheme. The model is based on
differences between men and women and, on a biological level, deals with the
influence of testosterone on the development of the foetus in the womb.

The first researchers
The term autism emerged for the first time from three different places in the world.
The first time was when Dr Chorus (Frye 1968) used it in the annual reports
(1937–1938, 1939–1940) of the pedological institute at Nijmegen in The
Netherlands. He used the term for children who were excessively withdrawn into
themselves.
Independent from this the term was also being used by the two pioneers in the
field of autism, the Austrians Leo Kanner (1894–1981) and Hans Asperger
(1906–1980), in order to describe children and adults who showed a specific
pattern of behaviours. Bleuler (1908) used the term, which means ‘withdrawn into

17

18

A Strange World – Autism, Asperger’s Syndrome and PDD-NOS

oneself ’, in order to describe schizophrenics being withdrawn into themselves;
this is, however, a completely different problem. Kanner and Asperger used this
term for a problem that always existed but was never given a name. Autism can be
recognized by a fixed pattern of behaviours throughout various countries and
various cultures (Frith 1989, 2003).

Figure 1.1 Hans Asperger (Frith 1997a).
Reproduced with permission from Cambridge
University Press.

Figure 1.2 Leo Kanner (Mottar 1954). Reproduced
with permission from Johns Hopkins Medical
Institutions.

It is amazing that both Kanner and Asperger used this term, working in different
parts of the world (Leo Kanner emigrated to America at the age of 28) without
knowing it. They used the term to describe a specific pattern of behaviours that
since that time has been given the name autism. The fact that they both used this
term is probably due to the fact that Asperger and Kanner both were originally
German speaking and that they had their education in the same time period, when
the work of Bleuler was prominent.
Kanner wrote in English, causing his work to be spread internationally much
faster. Asperger’s article became known about 30 years later thanks to Uta Frith’s
translation. The similarities between the two articles are striking. The tone,
however, is different. Asperger writes in warm and respectful terms about people
with an autistic disorder, emphasizing the special aspects more than the deviating
ones. This balanced and respectful way of looking at people with an autistic

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