Unravelling Autism

Unravelling Autism
Introduction to Autism with
the Socioscheme

Dr. Martine F. Delfos, PhD

Unravelling Autism

Introduction to Autism with the Socioscheme

PICOWO series part 12

Dr. Martine F. Delfos, PhD

ISBN 978 90 8850 728 1

e-ISBN 978 90 8850 734 2

NUR 770

Information on publications from Martine F. Delfos: www.mdelfos.nl

© 2017 Martine F. Delfos / SWP Publishers

All rights reserved. No part of this publication may be reproduced in any form without the written permission of SWP Publishers, Amsterdam, The Netherlands. Any person who does any unauthorised act in relation to this publication may be liable to prosecution and civil claims for damages.

Dedicated to all the people with autism and their families.

Antoine de Saint-Exupéry (1943) in Lettre à un otage: ‘Far from hurting me, you complete me when you differ from me.’

Content (extensive)

Foreword

1   Introduction

The pioneers

Prevalence of autistic conditions

The theories on autism

2   Autism and autistic behaviour

The classification of autism in the DSM and ICD

The diversity of autism and autistic behaviour

One side of the story

3   The Socioscheme and the MAS1P

Atypical development: the other way around

Two sides: delayed and accelerated maturation of the brain

The MAS1P

Theoretical background

The Socioscheme

The physical delay in autism

The elements of the Socioscheme

The core element: the me-otherdifferentiation

The hidden intelligence

Information processing: the drive for precision

Communication problems

The second side: acceleration

4   Diagnosis

The classification and the diagnosis

Necessary extension of diagnostic elements

The development of attachment

The second side

Cognitive intelligence

Need for precision

Specific interests and talents

Stress level and management

5   The basis of education and help: linking to the MAS1P

The perspective of defect

The perspective of change

The thinking frames

The perspective of development

The me-otherdifferentiation

6   Confrontation with the world

Talents, obsessions and repetitive behaviours

The virtual environment and gaming

Anxiety and aggression

Triggers for obsessive and repetitive behaviour, aggression and anxiety

Expectations they feel they cannot fulfil

Being interrupted while immersed in an interesting subject

Feeling being treated as stupid

Being bullied

Feeling alone

The urge to calm oneself

Criticism of others

Self-criticism

Social rejection

Being overwhelmed by sensory stimulation

The strength and weakness of exceptional logic and knowledge

7   Autism and life cycle

8   Epilogue

References

Outlines

Figures

Example names

Name index

Subject index

About the author

The PICOWO series

Foreword

For quite some time people have asked me to write a concise, readable book about autism with the theory of the Socioscheme and the MAS1P. To write such a book one has to have a deep understanding in order to choose the main points and write them down in a ‘simple’ way, even if it concerns one’s own theory. It took me some time to find the key to simple explanation, and now I do hope I found it.

Tony Attwood wrote in his foreword to my first and still basic textbook on autism (Latest version: Wondering about the World. About Autism Spectrum Conditions):

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.

This new book is a very brief version of what I wrote about autism. The aim of this book is to present an introduction to autism and also the quintessence of autism as I see it; the theory of the Socioscheme with the MAS1P, which is my own theory within the context of all the theories and research. Every research finding presents a piece of the puzzle, so it should all be incorporated in a new theory.

Hopefully this book will help people in getting a first impression of autism and the theory of the Socioscheme.

Martine Delfos, Utrecht, 2017

1

Introduction

Autism has always intrigued people. The characterisation ranges from ‘village idiot’ to the ‘village savant’ in the Middle ages. What people with autism encounter is being bullied to being treated with deep respect. Autism has bewildered and annoyed people because people with autism seem so different to we are accustomed to. Autism has been researched for a very long period, and it took some time before the concept found its place in psychology and psychiatry.

There are famous examples which fascinated the people in the past centuries who tried to understand the strangeness they experienced with some people. One of the examples is Kaspar Hauser (see Figure 1), an adolescent found in the streets of Nuremberg in Germany in the 19th century. He was probably hidden for years in the cellar of a house. The lawyer Anselm von Feuerbach, guardian of Kaspar Hauser wrote a book on his pupil in 1832: Kaspar Hauser. Beispiel eines Verbrechens am Seelenleben des Menschen. His description of Kaspar Hauser shows perfectly the broad scale of strange aspects which autism can present. It is one of the best characterisations of autism I ever read. His book was written long before the word ‘autism’ was invented, a century earlier. In their book on wolf-children and feral man from 1939, Singh & Zingg write a description of Kaspar Hauser based on the observations of Anselm von Feuerbach:

His face, in which the soft traits of childhood are mingled with the harsher features of manhood, and a heart-winning friendliness with thoughtful seriousness, tinctured with a slight tinge of melancholy; his naïveté, his confidential openness, and his often more than childish inexperience, combined with a kind of sageness, and (though without affectation) with something of the gravity of a man of rank in his speech and demeanour; then the awkwardness of his language, sometimes at a loss for words, and sometimes using such a harsh and foreign sound, as well as the stiffness of his deportment and his unpliant movements – all these, make him appear, to every observant eye, as a mingled compound of child, youth, and man, while it seems impossible, at the first glance, to determine to which compartment of life, this prepossessing combination of them all properly belongs’ (Singh & Zingg, 1939/1966, p.351).

Figure 1: Kaspar Hauser

In fact, this description of Kaspar Hauser fits to perfection the idea of the MAS1P, the Mental Age Spectrum within 1 Person which is part of the Theory of the Socioscheme (S-MAS1P) on autism with its idea of a delayed and accelerated maturation of the brain simultaneously in the case of autism.

How refined this description may be, clearly all people with autism are unique, and the broad spectrum of mankind also shows itself in autism. Just as all men seem alike and are all unique, the same also holds for women. One is always more than only ‘having autism’, ‘being male’ or ‘being female’.

The pioneers

The concept of autism was conceived by several people worldwide during the same period; the way important discoveries are often made. The seed for the development of the concept was planted by Bleuler (1857-1939, Figure 2) who used the term ‘autos’ from the Greek to describe a kind of inwards directed state of mind (Bleuler, 1908/1987; 1916/1983). He used it to describe one aspect of what he called schizophrenia. But after the birth of the word autism, used to describe a temporary state of mind within schizophrenia, several people used it to describe certain children and people they encountered in their health care profession.

The first to use the term autism to describe those children was Hans Asperger speaking about autism in a letter to his colleagues in 1934 (Feinstein, 2010, p.8), then again in his first article in 1938 (Asperger, 1938) and in another article in 1944 (Asperger 1944/1991). Hans Asperger (1906-1980, Figure 3) is the true pioneer of autism. In his 1944 article he explicitly writes that the strong cognitive capacities cannot be overlooked. He clearly states that the two sides cannot exist without each other: […] good and bad in every character are only two sides of the same coin. It is simply not possible to separate them, to opt for the positive and get rid of the negative (Asperger, 1944/1991, p. 89).

Referring to one of the children which came to his clinic with serious social problems he wrote in the 1938 article:

We say – not on the basis of a theory, but from the experience with many children, the positive and negative traits of this boy are two in natural necessity intercommunicating sides of a quite homogeneous personality. It can also be expressed as follows: the difficulties which this boy has with himself and with his relations with the world around him, are the price he must pay for his special talent (Asperger, 1938) (translation from German, Delfos).

Asperger speaks of the special qualities of people with autism as possibilities to obtain work and says that people with autism have their role in society: We are convinced then, that autistic people have their place in the organism of the social community (Asperger, 1944/1991, p. 89). The perspective of a two-sided development is already clear in his first article from 1938 where he describes a ten-year-old boy:

But the boy has another side, which is – apparently – in a strange contrast to the described abnormal symptoms: he is clever far beyond his years. Indicative of this is his language which, according to the syntactical complexity and the selected vocabulary, reflects the language of a highly educated adult. But his interests also, are those of an adult. He wonders about religious and philosophical problems. He observes people from a real, psychological interest, and has an unerring eye for their peculiarities, especially for their weaknesses (Asperger, 1938) (translation from German, Delfos).

In 2001 the Theory of the Socioscheme was developed the same way Hans Asperger developed his ideas, that is from the experience with children (but also adolescents and adults) and built upon the idea of a delayed and accelerated maturation of the brain, which is reminiscent of the two sides Hans Asperger mentions.

It was unfortunate that Asperger was Austrian and wrote his articles in German. His work was only disclosed to the world when his 1944 article was translated in English by Uta Frith in 1991 (Frith, 1997), eleven years after his death in 1980. However, in the meantime the world had followed the tracks of Leo Kanner who wrote his article on autism in English in 1943 (Kanner, 1943). Kanner (1894-1981, Figure 4), just as Asperger, certainly spoke about autism, but his generalisations were based on a more diverse group of children, not only children with autism. He also included children with serious problems such as epilepsy. Asperger said that his own perspective on autism totally differed to that of Kanner, even if there were some similarities (Feinstein, 2010).

Figure 2: Eugen Bleuler (1857-1939).

Figure 3: Hans Asperger (1906-1980).

Figure 4: Leo Kanner (1894-1981).

We could say that since the start of research on the subject autism (that is in 1938 by Hans Asperger) three revolutions have taken place. The first revolution is the discovery of the condition autism mainly by Asperger and Kanner. Both of them considered autism to be a genetically induced condition. After this discovery however, people such as Bettelheim and Lovaas placed the origin of autism in the education of the mother. Both Bettelheim (1975) and Lovaas (1974; 1987; 1996) used Kanner’s idea of the ‘refrigerator mother’ (Time magazine, July 25, 1960) to fit their own ideas. In Time magazine Kanner wrote ‘children with autism are the offspring of parents cold and rational who just happened to defrost long enough to produce a child’ (Feinstein, 2010, p.33).

Bettelheim had suffered when he was an inmate of concentration camps during the second World War in Germany. He compared the behaviour of the children with autism with behaviour of the inmates of the concentration camps. Observing the behaviour of the inmates Bettelheim concluded that their behaviour was the result of the Nazi brutality. He generalised this experience to autism and stated that the mothers were to be considered to have provoked autism in their children by their own cold behaviour. As for Lovaas, he was an adept of the newly developed learning theory just beginning to become important in America and in line with that theory he considered the behaviour of children with autism as learned behaviour which could be unlearned. The children with autism according to Lovaas had learned their behaviour from their mother and this could be unlearned. His work lies at the basis of the ABA, Applied Behavior Analysis and DTT, Discrete Trial Training. They are still in use at the beginning of the twenty-first century. Both are focused on teaching, less on learning and certainly not focused on development. More about this discrepancy between teaching and learning on one hand and development on the other hand in chapter 5.

The second revolution was the proof of the biological basis through the discovery of a genetic pattern, research which is still going on (Anney, et al, 2010). It was discovered that many genes play a role, a polygenetic origin with among them the chromosomes 4, 7, 10, 16, 19, 22 and the X-chromosome (International Molecular Genetic Study of Autism Consortium, 1998; Autism Genome Consortium, 2008; Holt et al, 2010; Anney et al, 2010; De Rubeis et al, 2014; Buxbaum et al, 2014; Di Napoli et al, 2015).

The third revolution is still ongoing at the start of the twenty-first century, which is that autism is not a defect but a delayed maturation of the brain and the body (among others: Hazlett et al., 2006; Begeer et al.,2006; Bastiaanse et al., 2011; Hua et al., 2011; Rueda et al., 2014; Peterson, 2014; DeRamus & Kana, 2015). In the next chapter we will go into this more deeply and precisely.

These three revolutions were not considered revolutions for the people with autism personally nor for their families. They knew it was not about schizophrenia, they knew it was hereditary because they could follow the trail of autism in their families and with respect to the third revolution they certainly knew that progress was possible. Going through these three revolutions was very frustrating for the ones directly concerned when professionals still thought, as many still do, that autism was a defect, which is rather a static perspective.

Prevalence of autistic conditions

The prevalence research on Autism Spectrum Disorders (ASD) is mainly according the DSM-IV classification and prevalence research according to the DSM-5 classification is rare.

Survey studies propose the best estimate for the prevalence of ASD as being 70 to 90/10,000 (0,7-0,9%) (Fombonne, 2009). However, this is not worldwide research. In many countries prevalence research on autism is not yet performed, or only in a restricted form. For example, in South America three studies are known (Lejarraga et al., 2008; Montiel-Nava & Pena, 2008; Paula, Ribeiro, Fombonne & Mercadante, 2011) and none of these three were population based. They show a very low prevalence. Firstly, in a Venezuelan clinical-based study a prevalence of 17/10,000 (0,17%) was found among 3 to 9-year-old children (Montiel-Nava & Peña, 2008). Secondly, in an Argentinian study among 839 children under the age of 5, recruited at three different health care centres, an ASD prevalence of about 1,3% was found (Lejarraga et al., 2008). Finally in a study conducted at a typical town in southeast of Brazil, the ASD prevalence was found to be 27/10,000 (0,27%) (Paula et al., 2011). The research of Dekkers and colleagues (Dekkers, 2015) was the first population-based research in South America and the researchers had to deal with the methodological problems of prevalence research in developing countries, choosing to speak about incidence rather than prevalence due to the fact that the diagnosis autism/ASD was not well known in the country and diagnosticians were very scarce. This resulted in an extremely low prevalence of 0.11%.

Views differ about the prevalence of autistic developments in men and women; Duchan and Patel (2012) speak about a ratio of 4:1. Wing (2001) mentions a 4:1 ratio for autism in general. Attwood (1998) mentions 10:1 for boys versus girls, but focuses on Asperger syndrome in particular.

The theories on autism

The new concept of autism gave rise to new theories and application of old theories to the concept of autism. The most important are the Theory-of-Mind (ToM) (Premack and Woodruff 1978, Leslie, 1987, Baron-Cohen, 1989), the Theory of Central Coherence (CC) (Frith, 1989/2003) and the Theory of Planning and Executive Function (EF) (Ozonoff, Pennington & Rogers, 1991). These three theories have been researched extensively, but could not explain autism as a whole, only a part. They could only contribute to the knowledge on autism as pieces of the puzzle. The ToM gave some insight in the social problem, the CC about the processing of information and the EF some general psychological information about performing tasks. See Outline 1 for the three ‘old’ theories and their core aspect.

The three most important ‘old’ theories in the field of Autism
theory | abbreviation | core aspect
Theory-of-mind | ToM | Difficulty with social interaction
Central Coherence | CC | Attention to detail and difficulty to form them into a whole
Planning and Executive Function | EF | Difficulties with planning, resistance to change, repetitive behaviour

Outline 1: The three most important ‘old’ theories and their core aspects

Not one of these three theories could give an encompassing explanation of autism. This presented an extra problem because in the meantime brain research showed that no specific part of the brain would function differently in the case of autism, and a specific different brain functioning is what we would expect for each of the three theories. What research showed is that the whole brain acts differently with people with autism (Bailey et al., 1996). This brain research showed that none of the theories could be correct as to explaining autism as a whole.

What was needed were theories which would be more comprehensive. Two new theories developed. There is the ESB-(Empathic-Systemizing-Balanced) brain theory from Baron-Cohen (2003), who went on searching for a theory, because the ToM he contributed to was not explaining enough, and the still more comprehensive S-MAS1P theory of the Socioscheme and the MAS1P (the Mental Age Spectrum within 1 Person) (Delfos, 2001/2011; 2016a; 2016b). The S-MAS1P seems to encompass all known elements of autism and is being supported by the latest (brain) research. All the already gathered pieces of the puzzle (theories and research) seem to fit into this theory. See Outline 2 for the ‘new’ theories in the field of autism.

The two new theories in the field of Autism
theory | abbreviation | core aspect
Empathic-Systemizing-Balanced Brain | ESB | Autism as the extreme male brain (systemising)
Socioscheme and the Mental Age Spectrum within one Person | S-MAS1P | Autism as an atypical development with a delayed and accelerated maturation of the brain

Outline 2: The two new theories in the field of Autism

Before we explain autism using the S-MAS1P theory, we have to make clear what autism is and what we understand by autistic behaviour.

2

Autism and autistic behaviour

Defining autism proves not to be so straightforward. The guidelines are the psychiatric-psychological-medical handbooks. In diagnostics two important handbooks are used: the DSM (Diagnostic Statistical Manual of Mental disorders from the APA, the American Psychiatric Association) and the ICD (International Classification of Diseases from the WHO, the World Health Organization). The first DSM (DSM-I, APA, 1952) was published in 1952, the second in 1968 (APA, 1968), the third in 1980 (APA,1980), the fourth in 1994 (APA, 1994) and the fifth (DSM-5) in 2013. This handbook is only about psychiatric problems. The ICD is a comprehensive handbook on all possible diseases. The psychiatric disorders are described in part V: Mental and behavioural disorders. The ICD is in its 10th edition from 1992, which has a 2016 version, the 11th edition is due for 2018 (WHO,1992; 2016).

The classification in these handbooks is the guideline for professionals to diagnose a specific behavioural problem. The classification is based on behaviour and statistical prevalence of a group of behaviours occurring together named a syndrome. Both handbooks are in general lines the same with respect to autism. The most commonly used handbook for mental problems is the DSM. Autism appeared in the DSM for the first time in the DSM-III in 1980. In the first two DSM’s (DSM-I, APA, 1952 and DSM-II, APA, 1968) ‘autism’ was considered a childhood type of schizophrenia. From 1970 onward things changed because Kolvin and his colleagues proved that autism had nothing to do with schizophrenia (Kolvin et al., 1971), and Kanner followed this by no longer speaking about childhood schizophrenia, as he did before.

The classification of autism in the DSM and ICD

The classification of ‘autism’ started with Schizophrenic reaction, Childhood type (DSM-I and II) changing into Pervasive Developmental Disorders (DSM-III and IV) with subtypes in DSM-IV: Autistic Disorder (also called Classical Autism or Kanner-Autism), Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder (CDD), and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and then into Autism Spectrum Disorders/ASD (DSM-5) individualised by naming specific characteristics such as: with or without intellectual disability; with or without structural language problem; associated with a known medical or genetic condition or environment factor; associated with another neurodevelopmental; mental or behavioural disorder.