Autism, Asperger Syndrome and related conditions newsletter

Welcome to the JKP Autism, Asperger Syndrome and related conditions newsletter, a monthly update of relevant news and events, entertaining interviews and articles.

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Exclusive Interview with Digby Tantam

Digby Tantam is the author of Can the World Afford Autistic Spectrum Disorder? Nonverbal Communication, Asperger Syndrome and the Interbrain, published by Jessica Kingsley Publishers. He is a Clinical Professor of Psychotherapy at the University of Sheffield and has written numerous articles and books on autism spectrum disorders. He also founded an Asperger Syndrome clinic in 1980.

How and when did you first become interested in Autism?

I first began working with people with autistic spectrum disorders in 1977 although I had come across people with autism before that, whilst in training. Unlike many other early workers in the field, I did not have a family member with autism. My interest came from a prior interest in nonverbal communication. That, I think, was itself motivated by my being a bit of a loner when I was younger, and having the chance to observe myself and other people and notice that a lot happened between people that was never acknowledged. When I read Freud's Interpretation of Dreams at the age of 15, I felt that I had known what he was talking about for years. I was wanting to be a doctor already, but it was that which prompted me to want to be a psychiatrist.

In your new book you discuss non-verbal communication. How does this differ between those with Autism and those without?

My new book is as much about people without autism, 'neurotypicals' as we are sometimes called, as it is about autism itself. I argue that neurotypicals are linked together, or rather our brains are, by a kind of wireless network, which I call the interbrain. Of course, it is not radio or microwaves that link our brains. So we are different from computers on a wireless network. But instead we have nonverbal communication. We look at what other people look at, we feel a tendency to smile or frown when other people do. We even touch our noses when other people do--it's a signal that something embarrassing is going on which can spread through a room in a short time. We don't learn to do these things. We just do them. But the consequences are profound. For example, all of us have been at a party when one of the other guests behaves in some inappropriate way. Even if it is way away from us, we know because, we say, 'there's something in the atmosphere'. We alter our stance a bit, perhaps getting ready to take some action, and the sound in the room increases in 'nervous chatter'. This happens in meetings of heads of state, I am sure, just as it does at children's parties. It's something that is a consequence of the activity of a part of our brains tuning in to other brains. People with autism do not tune in, or not so much--that's the main argument of the book. Their 'interbrain connection' is tenuous. They have 'low bandwidth'. Much of the book looks at the consequences of this. They are both good, and bad, for the person with an ASD.

What do you hope people will gain from your work in this field?

I hope that it will help people with an ASD and their carers understand their experience of being different from other people without really knowing what the difference is. Perhaps, too, it will help people with an ASD know how to minimize the impact of this difference. It may certainly help to understand why neurotypicals can be so uncomfortable around people with an ASD. Part of the book deals with this reaction becoming a reason for bullying people with an ASD. As a psychiatrist who works mainly with adolescents and adults, I am only too aware of the very destructive consequences of bullying for the victims (and in fact for the bullies, too although I see less of them).

Who or what most inspires you?

My wife has been an inspiration, and all of my recent books have been dedicated to her. But I would also say that life itself inspires me. The moments when one feels part of a pattern, a community of scholars, an expression of nature, a consciousness which can be flung into the universe and yet return unscathed.

What do you enjoy doing in your spare time?

I like working, and don't really think of having time 'spare'. But I do some gardening, cycle, write poems occasionally, read a lot particularly philosophy, science fiction and detective stories, walk with my wife in the peak district where we live, I listen to a lot to music particularly romantic music like Shostakovich, Janacek and Verdi, and cook as much as I can. Mostly though, I enjoy hanging out with my wife and my children although the latter are now all grown up and away.

Can the World Afford Autistic Spectrum Disorder? Nonverbal Communication, Asperger Syndrome and the Interbrain was released this month and is now available for purchase. See the below link for more details.

More details of the book

JKP News

The Daily Express interviewed JKP author Shana Nichols.

The Times covered an article on children suffering multiple behaviour problems ASD and ADHD, which featured Alphabet Kids - From ADD to Zellweger Syndrome by Robbie Woliver.

This month Bible Stories in Cockney Rhyming Slang by Keith Park has featured in: The Daily Mail, The Telegraph, on the BBC London News and the BBC London Radio Sunday Programme.

An article on Different Dads: Fathers' Stories of Parenting Disabled Children, will be featuring this month in Foreword Magazine.

Autism in the news - some of the articles in the media this month

The BBC reports on Genes having a key role in Autism.

This month's author feature:
Autism and Diet
by JKP author Rosemary Kessick

“How on earth could dietary intervention be relevant to our situation? It’s hard enough getting through twenty four hours never mind having to think about a special diet. Anyway there’s no scientific evidence.…….. ”

These are comments I must have heard hundreds and hundreds of times over the years from parents, teachers, doctors and nurses. It all started when my own beautiful son William, who will be twenty-one this July, began losing weight, screaming in pain, head-banging, stopping sleeping, suffering from constant diarrhoea and foul smelling stools, all accompanied by the all too familiar slide into autism.

“Par for the course.” I hear you say. “ That’s autism isn’t it?”

Well yes and no. That’s certainly what local paediatricians were suggesting and the symptoms were common to other children they were seeing. What was happening to my son all those years ago was catastrophic and it was crystal clear to me as his mother that he was in physical pain, so I started out on a very long road to try to work out how best to help him. The sheer intensity of the situation and day to day living, combined with the emotional pain of seeing my blue-eyed blond haired angel slipping away from me was almost too much to bear and the memories of those early days are indelibly imprinted on my soul.

Hard as it is to imagine, very few people had access to the internet back then and I was on my own with the telephone. Luckily we had a remarkably supportive family doctor who, whilst he didn’t know what was wrong with William, was just as worried as we were about his deteriorating health. Back then, I didn’t know about the work on diet, autism and schizophrenia in Norway or the early attempts here in the UK to replicate their findings which clearly pointed to gluten and casein as being major players in the degenerative descent into autism faced by some children.

As I analysed William’s behaviour and physical difficulties, the mists began to clear and it became obvious that milk products and gluten based products were causing major behavioural outbursts. Other foods were causing a myriad of reactions too, sometimes there would be non-stop diarrhoea, sometimes no sleep for a week, sometimes complete and total road-runner crossed with Taz like twenty-four hour a day activity and sometimes, joy of joys, all three!

Little did I know that embryonic research at Birmingham University in the UK had begun to reveal why other substances were causing problems so imagine my dismay when I found out that I could have saved precious time. I had made countless mistakes working out what the offending foods were and then using processed foods supposedly free from gluten and casein but which in reality still contained some.

We took some steps forward and some backward as we slowly and painfully worked out what was causing difficulty and why. We were gaining ground as William began to sleep better and understand more again and yet his gut problems were getting worse but that’s another story, for another day. By 1993 I’d worked out that B12 metabolism is an important part of the picture, that absorption is compromised and so much more but there was no mechanism to disseminate the information so that others could access the facts and so I eventually accepted the invitation to join and eventually run the little charity behind the Birmingham research called Allergy induced Autism. The original founders fell away and AiA grew and grew; we ran international conferences, we brought researchers together and supported them, we pieced the jigsaw together, answering thousands of queries each month from distraught parents and we placed bio-medical and gastrointestinal research in ASD firmly on the map, lighting the fires of imagination in the minds of researchers across the globe.

And the bottom line? Appropriate dietary intervention, implemented properly with attention to possible gastrointestinal disease and disorders can make the world of difference to so many people’s quality of life.

Oh, and there is scientific evidence to support it!