The best books on Autism

Tell me about your first book, Fairy Tales by the Brothers Grimm.

I think that almost all of us have been influenced by Fairy Tales. And that is particularly true in my case. There weren’t that many children’s books when I grew up and they were read to me again and again. Later on when I could first read I had a wonderfully illustrated book of Grimm’s Fairy Tales, which I treasured.

I think they are the stories that give you a lasting sense of wonder. They let you experience unexpected events and often terrifying ones. And, fortunately, everything comes out right in the end. They are stark tales and written in very basic language. There are wonderful images to nourish your imagination for life, for example Snow White in the glass case. I see this as an image that chimes in with ideas that were current when we were just becoming aware of autism in the middle of the 20th century: the idea of a beautiful but unreachable child. What might be going on inside her mind? How can she be woken up? In the tale there was a simple cause, a poisoned apple, and a simple and totally accidental cure. The apple was only stuck in the throat and came out again. It is a completely false image, but a very striking one. Sadly, the causes of autism remain unknown and there is no cure.

The tales also involve changeling children, an image often invoked by parents, and there is the story of the gifts given at the birth of Sleeping Beauty and the curse given by one bad fairy. Fortunately, this curse is counteracted by the gift of another good fairy. I think of this as a story about our genetic endowment at birth. We are all dealt out gifts of good genes and also some not so good ones.

Your next book was actually written by the mother of a child with autism, The Siege: A Family’s Journey into the World of an Autistic Child by Clara Claiborne Park.

Yes, the mother wrote it at a time when autism was not at all known. It was one of the first such accounts and it influenced me greatly because it gives such a detailed and truthful description of the everyday life of an autistic child. Now there are quite a number of biographies written by parents.

For a researcher they are rich sources of information. You can’t replace that kind of information by just observing a child for a few days. I have always been influenced by what parents say about autism. For example, in the case of Ellie, the little girl described in this book, she was both incredibly learning-disabled and incredibly intelligent. How can this be explained? This question has fascinated me ever since I started learning about autism.

Ellie had an amazing and very different sense of time, space and colour. And she is now actually a rather good artist. When she was little, she had no speech and couldn’t understand anything that was going on around her. She grew up in an extremely loving family and that fact alone was extremely important to be brought out. In those days some influential people thought autism was due to rejection by the mother. In the 1960s when I did my PhD this idea badly needed to be debunked. There was so little known about autism.

Which is very strange given that your next choice, The Little Flowers (Fioretti) of St Francis, was written in the 14th century.

When I wrote my book Autism: Explaining the Enigma, in the late 1980s, one day I dipped into this little book that I had inherited from my parents. It is a collection of legends from the 14th century, but anchored in history. Here among the early followers of Francis of Assisi, there was a character called Brother Juniper who was clearly simple-minded and did some strange things that went entirely against convention and indeed against common sense. But he was always forgiven because his extreme innocence and simplicity was considered a special gift.

He reminded me of Ellie, the girl from Clara Claiborne Park’s book. Just like Ellie, there was this person who had no understanding of what mattered in the world and yet was so innocent that people had to love him and make allowances for his strange behaviour. The stories are meant to be amusing and yet at the same time they make you aware that people like that must have been around.

It was very important to me to find out whether autism existed long ago. It would be very strange if it didn’t. I actually wrote a book on autism in history with an historian. We found a case from the 18th century with sufficient material to conclude he was indeed autistic.

Your next book, A Real Person by Gunilla Gerland, is written by someone with autism.

Yes, but she is rather atypical because most people with autism don’t write their own books, although a few have done that. She wrote this when she was in her twenties and no longer severely autistic.

I think people may not sufficiently realise this, but the behaviour problems brought about by autism can go away, or at least it is possible to learn strategies to overcome the problems. Gunilla managed to do this and she convinces the reader that she has an exact memory of what it was like to be autistic when she was a child. Through her memories we can glimpse the utterly different world of an autistic mind.

Some of the things Gunilla writes about are hard to imagine and for me were quite shocking to read about. For example, how unbearable a simple touch can be. When Gunilla touched a metal button her stomach turned over and she felt a sharp noise that would creep up her spine. She gives a really detailed description. So to have this kind of first-hand experience is amazingly revealing.

She influenced my work because she made me think about what it must mean for such a person to reflect on herself. This is one of the most difficult things to do for someone with autism. Amazingly, she is able to do this and, as the title says, she did become ‘a real person’.

Your final book is Soul Made Flesh: The Discovery of the Brain and How it Changed the World by Carl Zimmer.

Carl Zimmer is a science journalist and I like reading popular science books. I admire communicators who tell you about complex matters, which you would otherwise have little hope of learning about. I write scientific books so I understand how difficult it is. This book is a book about science and at the same time a book about history, and I love reading about the history of science. Here he writes about the beginnings of the Royal Society in the 17th century.

Thomas Willis is the main hero of the book. He was a doctor who began studying the brain itself in the turbulent time of the Civil War. Christopher Wren, famed for building St Paul’s Cathedral after the Great Fire of London, did some beautiful anatomically accurate drawings of the brain, which was interesting to find out about. And you have the astonishing idea that the brain produces the mind – and in Zimmer’s words, the soul is made flesh – which even today many people find hard to accept.

What I like about this book is that it is not just about the early history of how people came to study the brain, but it is also about recent brain science, where scanners are used to watch what happens in the brain while it is thinking. One of the ideas he tells about is some research I myself was involved with, the brain’s ‘Theory of Mind’. It is a strange concept, which is historically linked with autism. This is the idea that one of the fundamental problems in autism is an inability to understand that other people have minds that explain and predict their behaviour. And I find Zimmer’s account very interesting. We need to find out how the mind can go wrong in such a way that autism results and what it is that stops the ability to socially interact and communicate.

So, after years of research and many books on the subject, what is it about autism which fascinates you so much as a scientist?

I am surprised myself that something which I did for my PhD 40 years ago still casts a spell on me today, just as it did then. It is the enormity of the challenge – to find out what exactly accounts for the development of the mind. And what accounts for the mind developing in some cases so strangely? What does it mean that you can have talents even when you have serious disabilities. I have always been fascinated by this contrast. It tells us something about the structure of the mind. I think the mind is not just one hopelessly entangled mass, but can be divided into surprisingly neat compartments, as if we were looking at a house with many rooms. Many people shrink in horror at this idea. They are the ‘lumpers’, while I am more of a ‘splitter’.

There are other neurological conditions which tell us something about the structure of the mind. They all hold keys to open doors of many rooms that are yet closed. I think autism holds one of the main keys to give us insight into the mind.