The best books on The Miracle of Autism

So, first you’ve got my favourite book, The Master and Margarita, Mikhail Bulgakov.

I think it’s the best book I’ve ever read. My dad and I never agree on books, and he came up the stairs one day in about 1990 and he had this book in his hand and he said: ‘I’ve just finished reading this and I think this may be the best book I’ve ever read and I have a funny feeling that you and I are going to agree on this one.’ So, he gave it to me and, like a lot of Russian, or in this case Ukrainian, novels, the first 30 pages are heavy going but it’s the only book I’ve reread several times.

Beyond that, in terms of autism, it’s the book that inspired the song ‘Sympathy for the Devil’ and it’s all about compassion for yourself, for others and really how ultimately that’s all that matters. The story is that the Devil comes to Moscow for a week and it’s about what happens. The other part of the book is a conversation between Christ and Pontius Pilate. And, essentially, it’s about compassion. So, as a parent, and long before I became an autism parent, I was getting a crash course in compassion from Mikhail Bulgakov. It stood me in good stead. And anyone who has read that book will find it resonates with you all the time. There were many times, when we were going through all the stuff you go through as autism parents in the early years of autism…

How old is your son now?

He’s eight. He’s actually playing computer games right next to me now. He’s very, very much further along now, but in those early years it was very tough. I would say that having read that book several times, well, it’s a bit like a crash course in practical Buddhism, isn’t it?

Well, I’m so interested that you think that. I’ve always thought that it’s about truth and the fact that truth exists and is absolute.

But it’s compassionate truth. Like the lady who kills her child and is forgiven at the Devil’s ball. Basically, what the devil is doing is extending compassion to sinners and doing what Jesus is telling Pontius Pilate it’s all about and that’s why the Devil gets very upset with people who say they don’t believe in it. Really he’s the enforcer and dispenser of the divine law.

The Once and Future King. 

Well, T H White wrote this in the 50s when a lot of people were writing fantasy epics, like Tolkien and C S Lewis, Mervyn Peake and all these British writers who were writing masterpieces after the war. But I think what the books all did was to take the myths of the Nordic and Celtic peoples and make them available to a traumatised post-war populus and reintroduced romanticism in a context that people who’d fought in those wars could understand. This is the King Arthur story and I guess it’s about compassion. He doesn’t want to be king, he becomes king, his best friend and his wife fall in love and he is compassionate and understanding about that and he’s always trying to put the bigger picture first. It’s that thing of no good deed goes unpunished because in the end he dies, of course, by the hand of his son and sister. But he has done his best and been a good man throughout. The writing is beautiful beyond belief and it’s incredibly funny, particularly the first book, The Sword in the Stone. Again, the theme with these books is that they show you the bigger picture of people doing their best in difficult circumstances and whether they succeed or fail isn’t really the issue. The issue is that they are authentic as people.

In terms of dealing with autism, are you talking about compassion for your son, for yourselves? How do you direct the compassion?

Well, the early years of autism are all about dealing with suffering. Your child is suffering, with neurological traumas, you are suffering with helplessness and fear and loss of dreams, helplessness. And the suffering of when he kicks off in public.

And you must be exhausted too. 

Yes. You are basically like knights on a quest as an autism parent. You are questing for solutions and for a holy grail that may or may not exist. I guess when we went to Mongolia you could say that was a classic quest. I had to ask myself: what if there’s no change in Rowan at all? But that doesn’t matter because at least the diagnosis of autism didn’t stop us having an incredible adventure like that as a family. In fact it made us do something more beautiful and extraordinary than we would have done otherwise. So, suddenly, autism becomes a great gift and that shifts your perspective. In the event there was all this extraordinary change in Rowan. But these classic quest stories are always assumed to be allegorical in the western intellectual world, when, in fact, a lot of life is composed of very real questing and you need to have a bit of that in your bloodstream if you’re going to get through difficult situations in life. These situations where logic and reason and science suddenly aren’t helping you. You need a non-rational set of ideas to draw on.

Did you take any other children with you on the journey?

No. But Rowan made his first friend on the journey, a Mongolian boy we met outside Ulan-Bator, the son of our guide. So, in the end, there were two dads and two boys on the steppe travelling up into Siberia to the reindeer people and the shaman where the big changes happened. The changes have not only lasted but the shaman said we should do a healing journey every year until he was nine when the negative effects of autism would leave him. So we’ve been doing that. We were with the bushmen in Namibia and then last year we saw an aboriginal shaman and this year we’ve just got back from the Navajo reservation in Arizona where the most profound and immediate changes since Mongolia happened. We’re a bit freaked out actually, because Rowan is now scarily normal. We went with another autism parent and her son is much more severe, completely non-verbal and quite violent. I just got an email from her this morning saying he’s no longer biting and kicking and he’s becoming verbal. But it’s not a one-shot deal; you have to go back for top-ups.

By Night Under the Stone Bridge, Leo Perutz.

Best historical novel ever written, I think. It’s by a Czech writer and it all takes place when Bohemia ceased to be independent and came under the sway of the dastardly Krauts, but the Bohemian army fought this great Battle of the White Mountains in the early 17th century and lost. They were then dragged into the German-speaking world. This was written after World War I when the Czechs had been dragged into World War II. It’s another book about surviving and retaining your authenticity. It’s also a love affair between the Austro-Hungarian Emperor Sigismund and the Jewish daughter of the Rabbi Lowe who is the chief rabbi and a sorcerer. The legend of the Golem is that an early 17th-century Rabbi Lowe, when there was going to be a big pogrom, created a monster of clay who defended the ghetto. So there are Jewish, Kraut and Czech characters and it’s a series of interlinking stories with one part a love story, happening in dreams between Sigismund and the Rabbi Lowe’s daughter. So, the Emperor is just as helpless as everybody else in these events. It’s also very funny and beautiful.

The Hummingbird’s Daughter.

This is a recent book by a Chicano-American writer and it’s the story of a recent ancestor of his who was regarded as a local saint during the Mexican revolution in the late 19th/early 20th century. It’s about her life and a lot of it takes place around the medicine men and women who work on the ranches. She herself is the illegitimate daughter of one of the ranch bosses and not only is this a masterpiece of writing, it’s the best presentation of the shamanic world and the shamanic way of thinking that I’ve ever read, by someone who isn’t a shaman themselves and isn’t involved in that world.

I don’t know anything about this world at all. What kind of things do they do?

Well, shamans everywhere do the same thing no matter which continent they come from. Shamanism goes back to the original human way of addressing medicine and the spiritual needs of human beings. Most hunting and gathering cultures make no separation between those two things. There was once a shamanic tradition everywhere including in Western Europe but the church went to war on it pretty effectively which is why it’s unknown to us. People who knew how to do this sort of thing were demonised, to such an extent that anyone who knew about herbal medicine was likely to find themselves tied to a stake and burnt. It goes back to Africa and the oldest people on the planet, bushmen, with whom we all share DNA. They are about 200,000 years old and we all go back to that diaspora around 40,000 years ago. So it’s a pretty well-established thing. Shamanism is distinct from herbal medicine though shamans often know both. They are not going to use shamanism to cure a cold when they could use a herb to cure a cold, because the Shamanic thing is harder work. So, a shaman can be a man or woman and they are trained to go into an altered state of consciousness. While they are in that altered state of consciousness their experience is that they enter the spirit world and they interact with ancestor spirits, local nature spirits and the overarching divine. While they are in that state they can take something out that needs to come out, put something in that needs to go in, do hands-on healing. They will then often have a set of instructions. This is the same the world over, though the outward form might be different – the way of going into the altered state might be through the use of hallucinogens or through dance and so on.

They almost all exhibit some kind of neuro-psychiatric condition, adult autism, schizophrenia, epilepsy, bi-polar disorder. In many cases, if you met them in our culture they’d be institutionalised, but in those cultures it’s regarded as a qualification for a job rather than a disqualification from society. It’s a fundamentally different outlook – is this a sick person, or is this a different kind of person who will play a different kind of role? If you think about how practical these people are – they live in areas where you have to be competent to survive, they are not whimsical people and they will use western medicine if it’s available. But some things, particularly neuro-psychiatric stuff, is better addressed through shamanism. We can contain it with drugs but we certainly don’t have a way of making it a positive thing; we only have a way of seeing the negative sides. So, that’s what shamans do and that process is described in this book.

Anna Karenina, Leo Tolstoy.

A really really good book. I like it because it deals with the complexities of human interaction and the double standards of society. People who are considered moral do immoral things and people who are supposed to be immoral display great kindness. Tolstoy is very good at bringing that stuff into focus. All Anna tries to do is be her authentic self, and the people who are actually rather horrible, Vronsky and her husband, survive and prosper. And even the women in the book who do survive and prosper have to frustrate, deny and suppress their authenticity, so it’s a very feminist book. It’s an allegory for human rights in general and the right that every human individual has to be themselves.

I’m interested that you give it that reading. I’ve always thought it was anti-feminist. It drives me mad that, as with every book ever written by a man, the sexually promiscuous woman dies. 

She’s trying to be her authentic self, a sexual and loving woman and she gets whopped for it and that’s not fair. Basically what he’s saying is that it’s unfair and it shouldn’t be like this.

I hope that’s what he’s saying. I fear that he’s saying we couldn’t handle it if she got away with it and was happy. 

No, because he makes the point very early that Vronksy can’t possibly handle her because he is a sub-standard human being and that she casts herself before swine because that’s all that’s available and the men in this culture are moral dwarves. Go back and read the bits about how it’s necessary and expected to fuck other men’s wives. At the end of the day he fails her completely because he hasn’t got the guts. She’s the only one with the guts. He’s saying it’s tragic that a solid gold human being gets killed for expressing herself but all the wankers do OK because they play by the rules. Even Kitty is a bit of a shadow.

Do you live somewhere that Rowan can have the freedom to be himself?

Yes, but I think it could happen anywhere. I think you teach people survival skills. You have to teach someone not to take their trousers off and shit in the street and things like that but you don’t have to change who they are. Just because you’ve learned how to swim you don’t have to stop being who you are. I think most of us had the experience of not being able to be authentic and feeling that our parents didn’t get us, that we and the system we were in was wrong and discouraged us from being authentic. But I found that the only real success and fulfilment in life comes when you are being authentic. But the fear is so drummed into us that it can be hard to break the pattern. The interesting thing about an autistic kid, though, is that you can try to change them but it doesn’t work. That’s the great gift that they have. Their ego is in the background so they can’t be controlled by moral manipulation – what people think is irrelevant to them. There is a lot to be learned about authenticity from hanging out with an autistic person. They are almost born enlightened – it is healing to be with them. They show us it is possible to be another way. Now it’s one in 100 kids so it’s touching everybody. It’s a little bit like having shamans in our midst.