Autism from within. A handbook

I started to read the book yesterday and was so fascinated I couldn’t put it down until I had read it all. Her description of the world of the autistic child (and adult) and the examples she gives are so clear and accurate. The detailed and specific suggestions for helping a child (or adult) are so relevant and useful. I am particularly interested in the way in which Hilde analyses the problems that underlie the impairment of social interaction, communication and imagination in autism. For example, she describes the way in which typically developing children automatically and readily look for meaning in all their experiences. In contrast, children with autism have great difficulty in deriving meaning, tending to see an array of disjointed details and taking a long time (if ever) to make sense of the whole picture. —Dr. Lorna Wing

For those who have heard Hilde De Clercq speak, it will be no surprise to hear that this is a very special book. Her unique position as a professional, trainer, international speaker and, above all, mother of a young man with autism, enables her to speak with authority and insight on autism spectrum disorders (ASD). She draws on her experience in all her roles, and on her wide study of the literature, to address all the key issues in ASD and to provide practical and sensitive advice on how to tackle problems. She uses vignettes from her life with her son and from the writings of others with ASD, to illustrate her points and to help deepen the reader’s understanding, which is the basis of her approach. Her style is warm and open, with no unnecessary jargon. There are some problems with the translation but the content of the book makes it well worth ignoring those infelicities of grammar. This book deserves to be taken seriously for the way it integrates research, theory and personal accounts and is a valuable contribution to the field. —Prof. Rita Jordan

I must wholeheartedly recommend Hilde De Clercq’s wonderful book, Autism from Within. A handbook. De Clercq not only has a profound understanding of the nature and culture of autism but she is blessed with an enormous capacity for compassion and genuine affection for the autistic people with whom she works. All these elements emerge to the full in this book, which is an invaluable treasure-chest of advice on how to work with, and comprehend, autistic individuals. Let me quote just one paragraph which will, I hope, give you an insight into Hilde’s warmth and humanity: Working with autistic people clearly has an ethical side. They often have a low self-image and, if you do not understand autism well, it is easy to discourage them – even if you have no intention to. A certain vision underlies most work with autistic people; we have to raise them well, teach them how to behave, how to adjust themselves. However, we tend to forget that people with autism have the same feelings we have and that their sticking-point has to do with understanding, communicating and dealing with those feelings. We are – in that sense – better equipped and should never take advantage of this. ―Dr. Adam Feinstein

Autism from Within. A handbook is intended as a manual and practical guide for carers, parents and probably also for young autistic people themselves. Hilde De Clercq gently guides the reader into the world of persons with autism by taking a look at their play behaviour. Through their response and the anxieties and difficulties that may arise in fantasy play, role play, stories, dressing up and play acting, you become acquainted with a whole range of issues: the triad, problems with communication, social Interaction and imagination. This is made even more clear in the second chapter, which concerns language and communication. An autistic child is very ‘literally’ aligned. However, the language that non-autistic persons use is very flexible, appealing to imagination and intuition, passing on ideas without words. It is full of hidden communication. The question « Can you pass me the salt? » may be therefore logically answered with « Yes » by an autistic child, without the child actually passing the salt. You can therefore also imagine how such a child responds to expressions like « To beat about the bush », « It is raining cats and dogs », « Wipe your feet ». And how difficult it must be to understand what a person really means by « You really want an ice cream, don’t you? ». Ordinary children over-generalize: a chair is anything you sit on. Autistic children often lack this generalization capacity: every object is different. That’s why an autistic child can be helped, for example, by drawing up a word list. For example, « shoe » and all kinds of « shoes » and a list of what that entails, what they are used for. They must understand scientifically what others understand instinctively. They may think in black and white and have difficulties with the subtleties of language. They are visual thinkers: they often think in pictures, not in language. They find multi-track processing difficult. (For example: they either listen or write.) They find it difficult to plan, to start something and also to end it before it is finished, or having to deviate from a familiar, learned process. They have difficulty in empathizing, with emotions and feelings. For parents of autistic children, carers, people working with autistic persons and family members, it is therefore a continuous search, a constant piece of detective work and a puzzle to get to know feelings and position them. Every person with autism has his or her own knowledge system, a kind of personal communication system (non-universal) and comprehensible only to people who know him/her well or want to do so. The chapter that deals with sexuality and sexual training is an eye-opener in this area and is as clear an illustration as possible of how difficult it can be to understand people with autism precisely and to find the correct approach and solution. (These approaches range from « Let sleeping dogs lie » to « Learning self-protection »). Eating and sleeping problems, potty training, independence and daily living skills are issues that must be addressed « differently », because for every autistic child, each situation in a new context and a new circumstance is totally « different ». Just because they eat nicely at home does not necessarily mean that that they do so at school. At Auntie X’s, they behave totally differently from at Auntie Y’s. The No. 3 bus is not the No. 4. All these circumstances require new rules of behaviour to be agreed, lists to be made, social stories to be written. Autism from Within is a book that can in fact be a practical guide for carers and parents and anyone having to deal with autistic individuals. It is packed with everyday life stories, full of wisdom, insight, hints, topical lists, practical tips, suggestions, « step-by-step » advice. It also appeals to the heart and the imagination, especially through the poems between the chapters and even more so through fragments of text written by autistic people that bear appealing and eloquent witness to their world and the difficulties with which they continuously have to battle. Moreover, the book is immensely readable: you are not frightened off by major theories. What Hilde De Clercq writes comes from enormous experience, strong empathy and a big heart, and can be read by anyone who simply wants to know more about autism and the problems that these people have to face. —V. De Raeymaeker

The extreme attention to detail and the effects of « weak central coherence » were explored in her first book. This time, Hilde goes further and explores, in depth, the qualitative differences of autism in everyday life. This book is a practical guide, as well as a reflection on pragmatic language issues. One could say that there are indeed two cultures, one autistic and another non-autistic. The book builds bridges between these two perspectives on reality.

It is intended for students, professionals and parents, but could very well be read by anyone interested in knowing about the autistic spectrum. The author’s frequent references to the writings of autistic people themselves will open the reader’s eyes to the world of autism and provide a philosophical and educational framework.

Autisme van binnen uit. Een praktische gids is translated into English, French, Swedish, Polish, Spanish and Italian.

Mum, is that a human being or an animal? A Book on Autism

From birth, neurotypical children are looking for meaning. They soon understand the invisible, hidden meanings of things. They go ‘beyond the information given’ (Bruner), they feel intuitively that the meaning behind the perception is more important than the literal perception itself. They learn the abstract and subtle meaning of language and social behaviour. Children with autism start out with somewhat different theories and hypotheses. Not that the search for meaning does not exist, but it happens differently (Frith). Perception is dominant and sometimes details prevail in the maze of perceptions, details they select and put together to find meaning in this confusing, sometimes chaotic world.

I didn’t understand why my sister suddenly disappeared in the daytime. Kerstin had always been there before and now she no longer was. As my visual impressions were very clear and sharp, I connected whatever happened with what I could see. To me, everything boiled down to what I saw and sight was the most reliable of my senses. It was as if my sight was tangible. I desperately wanted to understand and this led to theories. If everything looked a certain way in the living room, the sun shining in through the curtains, the ashtray on the table with a newspaper beside it and if Kerstin then came home from school, I thought that everything had to look exactly the same the next day, for her to come back from school again. It quite simply had to be like that. And in fact, if often was… People often disturbed my theories. Just when I thought I had grasped the connection between things, someone would move the newspaper and I no longer knew what to think. Would Kerstin not come home now ? Couldn’t she come home ? Ever again ? Or didn’t I understand anything ? In that case, was everything else I thought also quite wrong ? No, it must be that my sister couldn’t come home until everything was put right again. The newspaper had to be back in its place- that must be it. If it wasn’t like that, everything I believed in and knew about was invalid. There was no flash of magical thinking in all of this. On the contrary, it was all immensely concrete. What I saw was what happened, neither more, nor less. On these occasions, when my theory was sabotaged by things not running out as I’d anticipated, I had to start on a new one. There had to be some way of understanding the world. ―Gunilla Gerland, A Real Person

People with autism have difficulties with meanings and concepts and have problems with generalizing their skills from one context to another. They have a tendency to see the details, but not the whole picture. They may show different behaviours and skills in different places or situations : they seem to think in ‘compartments’. This book explains the difficulties with central coherence and provides the reader with concrete tips for teaching people with autism to generalize their skills. Many people see a generalised generic church rather than specific churches and steeples when they read or hear the word ‘steeple’. Their thought patterns move from a general concept to specific examples….Unlike those of most people, my thoughts move from video-like specific images to generalisation and concepts. For example, my concepts of dogs is inextricably linked to every dog I have ever known. It’s as if I have a card catalogue of dogs I have seen, complete with pictures, which continually grows as I add more examples to my video library. ―Temple Grandin, Thinking in Pictures

Mama, is dit een mens of een beest? Over Autisme is translated into English, Danish, Swedish, French, Greek, Italian, Portuguese, Spanish, Tsjech, Hungarian and Russian.