美国国家公共电台 NPR In 'Shtum,' A Portrait Of Autism Drawn From Real Life

SCOTT SIMON, HOST:

Shtum is a Yiddish word. It means silence. It is the name of a novel also narrated 1 by the father of a profoundly autistic son who cannot speak. And it parallels a personal story for the author. Jem Lester, the author of "Shtum" joins us now from London. Mr. Lester, thanks so much for being with us.

JEM LESTER: It is my pleasure, Scott.

SIMON: This is a very powerful book. To what degree is this the story of your father-son relationship?

LESTER: To no degree am I the same kind of father to my son that Benny is to Jonah, the main protagonist 2 of the book. But Jonah's story within the book mirrors to a certain degree my son. A lot of the behaviors and the feelings that he inspires in the book - Jonah - are very, very close to my feelings because I couldn't really see the point in reinventing an autistic character when I had one that was just so close to home.

SIMON: Well, tell us about Jonah. I've read in interviews, you don't like the way autistic people are often portrayed 3 in popular culture.

LESTER: Well, Scott, I think things are improving. But certainly down the years, I think my first introduction to autism, really, along with a lot of people's, was Dustin Hoffman's portrayal 4 in "Rain Man." And I think since then, there has been this perception that an autistic child has some kind of special gift.

And I know from my own personal experience that when I've met people - strangers - for the first time or acquaintances have discovered that I had an autistic child, that was the first question they asked. You know, is he really, really good at something? Is he - does he have a special skill in something? Well, that's just a tiny, tiny percentage of the thousands of millions of autistic people in the world. It doesn't, in any way, reflect the 30 percent of autistic people who have no language and sit in a very, very different place on what people like to describe as the autistic spectrum 5.

SIMON: Tell us about Jonah. He's tough stuff.

LESTER: Jonah is 10 when we meet him in the book with no language. And because of that and because of the frustrations 7, he can suffer from bouts 8 of self-harm. He will bite down on his hand and has a big scar on the base of his thumb where he bites down through frustration 6. He is doubly incontinent, which means he's a 10-year-old that has to wear nappies during the day and at night. And yet, there is such a level of innocence 9 to him.

There is no anger in his face. There is something pure about the way that he looks and the sparkle in his eyes because he's unaware 10 that he's different. And he doesn't suffer from the normal kinds of ills that the neurotypical population do. He doesn't suffer from greed or jealousy 11 or resentment 12. There isn't a malicious 13 bone in his body. And on that basis, he's an extremely pure spirit.

SIMON: He can also be - I think it's fair to say this - frightening, can't he?

LESTER: Extremely. Yeah. He possesses, as a lot of autistic children do, he possesses an almost superhuman strength. And so when he does have a meltdown, he is virtually impossible to control.

SIMON: And this is something you know?

LESTER: This is something I know very well, yeah. And people have asked me questions about, did you really need to provide that much realism in detail? You know, was it really necessary? And I said, well, to be honest with you, I toned it down.

SIMON: Mr. Lester, did you wind up writing a novel about this, in part, to give a voice to your son?

LESTER: Interestingly, Scott, when I first took the project on, I spent a short while attempting to write the book from Jonah's point of view. And it didn't take me long to realize that it would just be a monumental task and one that would probably be unreadable. And I knew somewhere along the line within the book, I wanted him to be able to have that voice. And so there is a passage in the book where I take on writing in Jonah's voice.

SIMON: Let me ask you to read a section of that if you could.

LESTER: OK. (Reading) Apparently 14, my name is Jonah Jewell. I know this because they repeat the sounds when looking at me and I'm off somewhere investigating. Light fascinates me a lot, especially when it splits into colors and when it reflects off a leaf close to my eye. I don't really know what time is. But when there is no light for me to investigate, I like to play with the water and bubbles and float in the warmth until he, Dad, he tells me it is time to get out.

Then he dries me and dresses me quickly so I can go downstairs for Marmite toast. And if there isn't any Marmite, I throw the plate across the kitchen because I have Marmite toast for breakfast. I jump up and down and pull at his hand because I have Marmite toast for breakfast. And then I grab at his face and hair because I have Marmite toast for breakfast.

And I won't let go, so he opens the back door and forces me outside into the garden where I skip round and round screaming because I had Marmite toast for breakfast. Then the door opens, and I run in. And there is Marmite toast on the table. So I sit and eat because it's what I have for breakfast. And he sits on the floor with his head in his hands.

SIMON: Mr. Lester, this is very tough to hear. But you've really written it so beautifully.

LESTER: Thank you very much. I really appreciate that.

SIMON: What does Jonah, in the novel, teach his parents? What has your son, Noah, taught you?

LESTER: My son Noah has taught me patience, compassion 15. He's taught me to understand the things in life that really should be important to everyone. And they're the kind of life lessons that you only really learn by being around people that have no axe 16 to grind.

So it's made me far, far more aware of just how many things in this world that have no bearing on my life and that should not in any way upset me or drive me mad just are worthless and pointless and not worth thinking about. And on that basis, I suppose, despite everything else, there is - I find a contentment in my own life that doesn't require me to, you know, search after goods and services and all the other things that maybe at some point when I was younger, I had been trying to fight for.

Now I understand. And that's through someone that actually has never told me that. He's never sat me down like a wise old man and given me the talk. He hasn't had to say anything. He's just had to be him. And I think that's a massive gift.

SIMON: Jem Lester, his novel "Shtum." Thanks so much for being with us.

LESTER: Thank you very much, Scott. It's been a privilege.