Autism from within
Autism is a ‘pervasive’ developmental disorder. You think in a different way, and therefore you live in a different way. That pervasive aspect is still much underestimated, even though the word is quiet clear. The word pervasive comes from the Latin pervadere: wide spread, to go through every part of personality. ‘Envahissant’ in French (like an invading army), ‘eingreifend’ in German (yes, it grips you from within). You often hear professionals say: it is as if you need to hear autism explained a hundred times before you really understand what it is about.
I took the inspiration for this book mainly from my experience with Thomas (born in 1986). I believe that without that daily experience, it is impossible to understand autism and to deal with it. Only then can you penetrate the depths, as title of the book suggests: ‘Autism from within’. That is why I often quote high-functioning people with autism. Through their testimony, we understand autism better. For them, it is not so easy to live with us, the people who often do not understand them. They often feel like they are aliens from another planet.
This book covers the whole range of this disorder: from the autistic symptoms and atypical autism to Asperger’s Syndrome. It is about people with autism at every level of intelligence, from severely impaired to very gifted, from non-verbal to highly articulate.
Autism is an invisible handicap. You cannot see the handicap on the outside. When you have read this book, you will understand better that autism has little to do with having eye-contact or not, stereotypical or difficult behaviour, or a resistance to change. Those are just outward symptoms, even though they help us understand the basics of autism.
A number of these characteristics (resistance to change, stereotypical behaviour and the need for stability, predictability and extreme clarity) can be seen in ordinary people at times of great stress, although not to the same extent or intensity as in people with autism, nor all at the same time. After all, ordinary people are not autistic. Autism comes from within, not from the outside. So you need to learn to understand people with autism through their way of thinking, through their different way of dealing with information. — Hilde De Clercq
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. — 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 Asperger syndrome, 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. — Rita Jordan
I must wholeheartedly recommend Hilde De Clercq’s wonderful latest book, “Autism from Within – a Handbook”. De Clercq not only has a profound understanding of the nature and culture of autism but, like her colleague in Belgium, Theo Peeters, 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 of 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.” — Adam Feinstein
I am honoured to introduce this book on behalf of the Centre for Training in Autism. We have waited a long time for a book that so clearly describes the pervasive character of autism. We all need a book like this very much: both professionals, because we may not fully recognise the deeply hidden painful side of autism in all its aspects, and parents. I think back on the many conferences I have given with Hilde De Clercq where people with Asperger’s Syndrome would come up to her and say, “Yes, you really understand us”. I also know Hilde daily answers to emails from people with autism. We have always tried to emphasize that you have to try and understand autism from within, to try and see the world through the lens of autism, not focusing on certain symptoms but digging deeper for the causes. We always called this approach the ‘iceberg philosophy’: the tip of the iceberg is visible, but the largest part is hidden under the water. The biggest challenge to helping people with autism is to learn to think as they do… This is the most difficult aspect and demands the most imagination.
Why does Hilde De Clercq understand autism so well? She has been both professionally involved full-time for many years with the Centre for Training in Autism, and she is the parent of a child with autism. She is actually able to see autism from both sides. Thomas, her son, puts it even better. Hilde often finds solutions for a problem ‘because mummy is both normal and autistic at the same time’. Everyone needs this book. First and foremost, it is intended for professionals. Many will be surprised that there is still so much to do. But it has also been written with parents in mind and in the intention to make the book as accessible as possible for a wide audience.
Finally, Hilde also wrote this book for those who have autism themselves, so that they can see that many of the so called normal people are concerned about them and want them to be better understood. Between our two cultures — the non-autistic and the autistic — we need to build more bridges. This book helps us on our way. — Theo Peeters
Mum, is that a human being or an animal?
A Book on Autism
This is the kind of book that should be written more often. Sometimes we learn something new through personal experience, something which up until now, has not been the subject of research. This time, it is how ‘thinking through details’ works in an autistic child.
When I heard Hilde De Clercq talk about her son’s ‘thinking through details’ or ‘local coherence’, almost a synonym for ‘weak central coherence’, at a conference a few years ago, I immediately recognized it as a new important breakthrough. I remember first telling the audience, “This is an interesting point, but you must first have in-depth knowledge about autism.”
“In-depth knowledge?” replied Hilde. “But, it is precisely through his ‘thinking through details’ that I have always been able to explain my son’s autism.”
In her notes, I read the following recollection: Thomas waves at his grandfather only if he is in his green car, never if he is in a car of another colour. The same holds true if the car turns left, he waves. If it turns right, however, he does not wave. I asked Hilde to continue her research on this theme and it was tested for the first time in Skive, Denmark, during an international conference gathering of one thousand participants. I still recall some of the reactions.
Marie Bristol, former TEACCH colleague and presently head of the American Autism Research Institute (the CPEA) in Washington, stated, “I have never heard anyone explain the world and life from the point of view of a person with autism as clearly as in Hilde De Clercq’s presentation.” Yannic Beyer, director of the Brondagerskolen for autism in Copenhagen, said, “For years we have been talking about the importance of visual back-up for people with autism. After this presentation, we finally understand a bit better what they really see.”
Since then, Hilde has been holding conferences on this topic. Sometimes, parents and professionals don’t immediately recognise this “thinking through details”, but they always come back to it. “Yes, many of these issues we were not able to pinpoint previously, have to do with ‘thinking through details’.”
You can’t always find what you are looking for. An issue must first have a name. In this little book, issues are given a name and, therefore, they become recognisable.
In the workshop on parent-professional collaboration, I often hear Hilde say, “Listen to what parents tell the babysitter about their child. Generally, you will find examples there of ‘thinking through details’.”
Gunilla Gerland, author of A Real Person, and a person with autism herself, has also encouraged Hilde to continue her research and write a book. Gunilla especially appreciates Hilde’s respect for Thomas’ thought process. All too often we find that educators try to ‘eliminate’ it or try to adapt it to our way of thinking. That is often the price we pay for that great idea, ‘integration’.
After having read, Mum, is this a human being or an animal?, V.A., another woman with autism, wrote, “Sometimes a detail that seems insignificant leads me to locate and check certain things and events. This allows me to reach a level of understanding and the possibility of a concept which, in turn, will lead me to the real content. Detail is my first stronghold, a landmark for my way of thinking, analysing and determining. Whether the detail is important or not is something I can only find out once I’ve reached the level of understanding, and not vice-versa. I relate to what Hilde De Clercq writes about Thomas. I have been down the same path. I think through details and still today, in any situation with new data, I follow the same mental route as I have always done, from the beginning.”
“My relationship with Thomas”, said Hilde, “has truly and strongly shaped and determined my life and my awareness. He would present me with an enigma and we would figure it out together. My experience living with him is the key to this book. In fact, this book should be called Thomas’ book, because it is not mine, it is his. It is a homage to him.”
If ten people cover their eyes, touch an elephant for a few seconds then describe their experiences, each will probably describe a different part of the animal’s body. But the person who describes its long trunk or its ivory tusks will make the animal more recognisable than the person who focuses on the left foot. Autism can also be explored in different ways. The person who tries to understand autism through ‘thinking through details’ will have a sound basis for understanding the syndrome and also for treating people with autism. This is why, Mum, is that a human being or an animal?, is a must read for anyone involved in the world of autism. This is no exaggeration. Read it.