From Theoretical Understanding to Educational Intervention
I wrote this book because it had to be written. The links between theoretical knowledge and educational intervention for people with autism is often insufficiently understood.
The most important impulse for writing this book came from the European Conference of Parents’ Association in Hamburg (Autism: Today and Tomorrow May 6-8, 1988). It was an important conference because in a broad European context it clearly bade farewell to the psychogenetic interpretations of autism and opted instead for treatment using educational strategies. But within this ‘organic educational’ orientation there were so many different slants that many professionals and, of course, parents felt somewhat lost: where was the wood and where were the trees?
There often seemed to be a huge gap between theory and practice. Theorists give interesting speeches, but what was their relevance to, for example, teachers? Between the various meetings, one heard teachers and other professionals airing their doubts: they had already been forced to try many different methods and therapies and now they were asking themselves why. Parents were only too used to such a general lack of direction. No effort was too much for them, but there is nothing more exhausting than battling in a void where you do not really understand the whys and wherefores. I believe that professionals and parents need a sort of ‘working philosophy’ of autism: a paradigm that builds a bridge between theory and practice.
In the worst case we might land in a kind of autism supermarket where all the different approaches to autism are displayed together, with room for all (a little holding therapy, a little option method and a little delecato; in other words, a coktail). This is not a plea against openness – quiet the contrary – but no-one with autism can survive in a maze where one approach is accepted as well as its opposite.
The theories defended in this book have an established scientific base, and this also has implications when they are put into practice.
At the moment autism is the most well-documented and most well-understood syndrome in child psychiatry. More articles and books have been written on autism in the West than there are children with autism. There is, then some insight into the subject (you will find it in this book): the day when it was possible to hind behind ‘the riddle of autism’ are over.
In this book I attempt to explain the link between a theoretical understanding of autism and it’s consequences for education. I attempt to pass on a working philosophy for professional carers from which they can develop and educational methodology. Five important theoretical concepts are explained, one in each chapter, and each is followed by a general discussion of practical application.
This book was intended for a broad public; it is meant to be informative rather than academic. For this reason I have intentionally avoided inserting too many bibliographic references in the text, which might slow the reader down. However, I have of course, drawn on many sources for my information. The interested reader will find a select bibliography at the end of the book for further reading.
I am happy to be able to illustrate more fully the points made in this book with so many striking examples. In earlier publications I was criticized for drawing on too many examples from ‘low-functioning’ persons with autism. This time the reaction is likely to be the opposite. In recent years numerous high-functioning individuals with autism have had their say in all sorts of publications. They are witnesses to the fact that we professionals are on the right track with our insights; sometimes they also helped to sharpen the focus of our insights or to adapt them.
I must also give special thanks to Hilde De Clercq and Cis Schiltmans for allowing me to use so many of their moving anecdotes and to Francesca Happé, Rita Jordan and Stuart Powell for the useful comments. Thank you also to my daughter, Maya, who made some of the drawings.
The supplement on ‘Ian’ can be taken by the reader as a reward for studying this book. It seems to me to be written so completely from the heart, and to contain so much wisdom and tenderness, that it seemed unethical to keep it to myself.
This book also hopes to contribute by breathing new life into work with autism. At the moment we find ourselves in a sort of deadlock between professionals who believe in a specific autism approach and authorities who are not sufficiently aware that the problems of autism cannot be solved by training alone. Autism is not only an educational problem, it is also a political one. Understanding educational strategies to help people with autism is a well and good, but to put these educational strategies into practice demands suitable means.
Medical and Educational Aspects
Why does he never look at me in the eyes with love and affection? Why does he laugh when I cry, instead of crying with me or asking why I am so sad? Why is he so nice to me when I have a red ribbon in my hair, and not when I am wearing a blue one? When he cries and I want to comfort him and cuddle him in my lap, it just makes him worse.
When he is frustrated, he says, “The trains are leaving”. If he wants to sit on the swings, he says, “There are no more oranges”. For days on end he sings ‘choo-choo train’, but when I take him to the station and show him a dozen trains and ask, “And what do you see now?” he says, “Spaghetti with meat balls.”
“Ordinary people cannot understand why a mother allows her child to bang his head against the wall, or that she doesn’t punish her child when he turns her bag upside-down in the supermarket trolley”, writes M. Akerly (1988), the mother of an autistic boy who has since grown to manhood.
While autism may well be the best-documented and validated childhood syndrome (Rutter and Schopler, 1987), there is still an enormous chasm between the theoretical understanding of autism and understanding it in the practice of daily life.
What is the essence of the problem? Put it in the simplest of terms, people with autism find it difficult to deal with symbols, just as there are people who have problems with seeing or hearing. Unfortunately, human society depends on symbols, and language is a perfect example of this. Sounds stand for, that is, things symbolize, actions, thoughts and feelings, and people with autism are known to have great difficulty with language. In other ways besides language, too, social interaction depends on the use of symbols, such as nodding, smiling and shaking hands. It is known that people with autism have great difficulty with social communication.
People with autism consequently live in a world they do not understand, or understand only with difficulty, a world in which they are unable to make themselves understood, or again only with difficulty. So it is not suprising that they apparently withdraw from what that world and occasionally express their frustration by banging their head against the wall or flying into a temper.
This withdrawal lies at the root of the name which has been given to the syndrome, or set of symptoms. The word autism was coined by Eugen Bleuler (1911) from the Greek autos (= self) to designate a category of egocentric thinking that is typically present in schizophrenia. When Kanner (1943) described ‘autistic disturbances of affective contact in young children’ — or ‘early infantile autism’, as he later preferred to call the syndrome — he used the term rather differently, although with a specific reference to schizophrenia which he at first thought was related to infantile autism but later tried to distinguish clearly from Kanner syndrome. Nowadays, when the term autism is used, Kanner syndrome rather than the schizophrenic syndrome is implied. In a way, the use of the term autism for this childhood syndrome is misleading, implying as it does a spurious link with schizophrenia and also that ‘extreme aloneness’ (synonymous with ‘autism’, according to Kanner) is somehow at the core of the syndrome.
Just as visual or auditory handicaps have a physical, biological and organic basis, the underlying cause of autism is likewise physical, biological and organic. Understanding of this has grown in recent years and this book considers this view.
And just as people who are born with a visual or auditory handicap require education and guidance matched to their specific handicap, people with autism need education and guidance matched to their particular handicap. This education and guidance are very special, because the handicap itself is very special. They are essential, however, if people with autism are to be permitted to lead something to resembling a satisfying life. The educational approach to autism has likewise undergone tremendous change in recent years and is considered here.
This therefore, defines the main ingredients of the book which is divided into eight chapters. These fall into three sections: Chapter 1 and 2 discuss autism in general; Chapter 3 to 5 consist of an introduction to the medical grounds of autism; and Chapter 6 to 8 cover the educational approach to autism. The first two chapters give the clearest possible description of what autism entails precisely.
The medical community and the teaching profession, whose life and work are traditionally separated, should find, inform and inspire each other, if people with autism are to be offered in practice what they can currently be offered in theory. The purpose of this book is to contribute to this endeavour.