Lorna Wing is Britain's leading psychiatrist on the Autistic Spectrum condition, and although she has written a review on 'Children and Teenagers With Apergeres' by Anna Van Der Post, she has included a huge amount on Autism. So rather than put it in the book review section, I have chosen to put it here in the Articles on Autism because of it's content, which I feel would be more useful for people interested in this condition. I would like to thank Anna Van Der Post of Asteens for allowing me to post it.
This book (Children and Teenagers with Apspergers) is written by parents and carers of children and teenagers with Asperger's Syndrome. It will be of intense interest to other parents and carers of such children and to any reader interested in the remarkable variety of human behaviour. It must also be read by professionals whose work brings them into contact with Asperger's syndrome or, for that matter, with any form of autism.
Autism spectrum conditions are due to untypical brain development. The specific aspect of brain function that must be affected (whether or not other functions are also involved) is that concerned with the social instinct. Typically developing children are born with the ability to recognise and respond to other human beings as very special and important. They look at other people's eyes virtually from birth. They develop a responsive smile by about 3 months and, towards the end of the first year, they are pointing to things in the environment that interest them and are eager to share this interest with their parents or carers. They begin pretend play in the second year, which eventually allows them to act out being another person. This is the key to the development of understanding that other people have thoughts and feelings. This underlies the ability, developing through childhood and the teenage years, to imagine the consequences of their own actions for themselves and for other people - a skill that is essential for living a good social life. (Uta Frith refers to this skill as ‘theory of mind'.)
Much research work still needs to be done in order to understand the brain functions underlying the social instinct. These functions are likely to reside in the older parts of the brain, because this instinct is to be found in different forms throughout the animal kingdom. Those of us who have beloved pets know how social feelings can develop between individuals of different species as well as within species. The strong social instinct in dogs has led to their use in all kinds of tasks in co-operation with humans. Most recently, they are being trained to work with children with disabilities, including all forms of autism.
What happens when the social instinct in a human child is absent or only minimal? The stories told by the contributors to this book answer this question in graphic detail. Each story is different but all of them express the puzzlement felt by parents in their child's early years when he or she looks physically so normal but shows behaviour that is subtly different from most children of the same age. These early differences are so subtle that most professional's who are consulted, unless they have special experience, fail to recognise that there is anything to be concerned about.
As the child grows older, these differences become more and more obvious to parents, others in the family and friends. However the differences are in social behaviour and do not fit any pattern of symptoms and signs associated with conditions that are familiar to the conventional medical world. They are the result of the inability to understand that other people have thoughts and feelings.
The problems around early diagnosis described in this book are all too familiar to me. I am a professional (a psychiatrist) but I have also had personal experience. Autistic disorders are less common in girls than in boys but, in the 1950s, I had a daughter who had very typical autism, as described by Leo Kanner, and was also severely learning disabled. This should have made her problems easy to recognise but she had no physical symptoms and was not diagnosed until she was over three years old and then only because we were able to consult one of the few top experts in autism. Because of my daughter, I moved from adult psychiatry into the field of autism in which I have worked for the past 40 or so years. I had the good fortune once to meet and talk with Professor Hans Asperger (a charming and courteous man). I have also seen and diagnosed many children and adults who have autism and average, high or even very high intellectual ability as well as those with learning disability. My experience has taught me that, difficult to live with as all such children and adults are, it is easier to be a parent of a typically autistic and learning disabled child than one who fits the picture that Asperger described and who has good skills in some or many areas despite the social impairment. The truth is that the parent is in charge of a learning disabled child with autism and little or no language, whereas a child with autism, good skills and fluent language is in charge of him or herself and does not recognise any kind of social hierarchy - certainly not parental authority.
As the personal stories in this book illustrate, methods of "treatment" which involve authoritarian management of behaviour do not work with the more able people with Asperger's form of autism. It is far better to work in positive sympathy with the special interests of the person concerned, using them as gateways to wider interests, rather than to oppose them. Asperger himself pointed out that parents should remain calm and detached in all situations. He emphasised that rules are more likely to be obeyed if they apply to everyone in the household and not just to the person with Asperger's syndrome. It is also important to remember how people of this kind respond to language very literally. Care must be taken to use plain and simple instructions, given as from an equal, not a dominant superior. Over the years some learn social skills through intellectual effort, not through instinct or instruction. Progress varies widely between individuals, some learning very little, while others manage to cope with personal life, work, and even, in some cases, marriage, given an understanding partner.
A fact that stands out strongly from the stories in this book is the ignorance of most professional workers concerning autism. It is not their fault - the relevant knowledge and the teaching thereof is in extremely short supply. Before our daughter was born, my husband and I trained as psychiatrists working with adults. We learned nothing about autism during this training. It was only the personal experience of having a daughter with autism that made me enter this field and has made it much easier for both of us to understand the nature of autism spectrum conditions.
I sincerely hope that, now that knowledge of autism is increasing, useful information on the subject will eventually be taught to students of all relevant professions. Also that psychiatrists and psychologists working with adults as well as those who work with children will be given the knowledge of child development that will enable them to recognise and diagnose autism at any stage of life, however it is presented.
What shines through all the accounts in this book are the strong positive feelings that parents and carers have for their children despite all the difficulties. They recognise that it is a developmental disorder and not the fault of the child or adult concerned.
Asperger himself pointed out that aspects of the picture he described, such as the ability to concentrate on a particular subject despite all distractions, are valuable and necessary for success in the arts or sciences. There is no doubt that some brilliant people who have contributed much to the world have had Asperger's syndrome. Of course, only a minority with this syndrome fit this picture, but the fact that some are geniuses is of interest to many young people with the syndrome and a solace for their parents. It is to be hoped that the Autism Act 2009, just passed by parliament, will help to improve the diagnostic and other services available to adults with autism spectrum conditions.
This book (Children and Teenagers with Aspergers) is essential reading for all those whose work brings them into contact with children and adults with autism spectrum conditions as well as for parents and families who are personally involved.