MICHELE NORRIS, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Michele Norris. The author and journalist Karl Taro Greenfeld has lived in the shadow of autism. He doesn't suffer from the disease, but his only brother, Noah, is severely autistic, and that difficult fact of life penetrated every aspect of the Greenfeld home.
In the 1970s, his father, Joshua Greenfeld, wrote a series of groundbreaking bestsellers about Noah's struggles. After that, there were magazine covers and television features. Noah became a national celebrity, and that shadow of autism, it grew.
In a 1978 segment of the CBS program "60 Minutes," Dan Rather asked a young Karl Taro Greenfeld about life with his brother.
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Mr. DAN RATHER (Newscaster): Do you ever wish that Noah were a normal brother?
Mr. KARL TARO GREENFELD (Author, "Boy Alone"): Yeah, lots of times.
Mr. RATHER: When do you find yourself wishing that?
Mr. GREENFELD: We can take trips if he was normal. You know, we could do things a normal family could do. Like right now, we have to center our lives completely around him. But if he was normal, we wouldn't have to do that.
NORRIS: That was Karl Greenfeld at 13 years old. Today he's 44, and he's told his story in an unflinching book called "Boy Alone: A Brother's Memoir."
Mr. GREENFELD: Every teenager is ashamed of his family, of course, but why do I have to deal with this extra, unwanted scrutiny brought on by having an autistic brother - the spitting, hair-pulling, screaming, tantruming younger brother who doesn't allow me to pretend for an instant that we're a normal family? As if having a Japanese mother and Jewish father is not enough, I've become locally famous in my school for nothing more than having a retard brother.
NORRIS: Karl Taro Greenfeld acted out as a teenager, and he struggled with addiction into adulthood. He's also found success as a writer. He's happily married with two kids of his own, but the book makes clear that the shadow of autism is always there.
Mr. GREENFELD: When you have a developmentally disabled person in your family, whether that's a child or I suppose people who have parents who have Alzheimer's and take them in, the sort of gravity of the family is just tilted disproportionately toward that person, and in my family, Noah became the center of everything.
Almost as soon as I have a memory of myself, the memory is of worrying about Noah and the family worrying about Noah and people trying to figure out what to do with Noah. And early on, it's what's wrong with Noah? Why isn't Noah speaking? Why isn't Noah doing all the things he's supposed to do? And then later, the dilemma shifts to what are we going to do with Noah? We have to find a place for Noah. How are we going to take care of Noah? So the whole conversation in my family was very much I feel like 80 percent Noah and then 20 percent probably the stuff everyone else talks about.
So I was very much the less-important sibling, but I don't look back on that with any kind of self-pity. It just was the reality of the situation.
NORRIS: You know, you say that you don't have pity when you look back, but you do write with a mixture of empathy and anger. You describe many times how beautiful Noah was, but you note that it was almost like a trick that he could use to seduce people, his caregivers, in some cases your parents, in some cases the psychiatrists that he was dealing with. And you describe him as someone who was jibbering, finger-twiddling, head-bobbing, spitting, and you use the word idiot more than once.
Mr. GREENFELD: Well, it's not very politically correct, I guess, the term idiot. I think it's what society used to call people like Noah, and I think I use it in that more classical sense of the word idiot. But no, I pity Noah emotionally, but I don't pity him intellectually because what has Noah been in my life but something of a burden, and what has he given me as a brother other than a sense that I have to worry about him and take care of him. And going forward as my parents age, and my father is in his 80s, my mother in her late 70s, ultimately won't the burden of Noah fall to me?
NORRIS: You know, Karl, a lot of people believe that people with special needs come into our life, and when they do, they are almost like a kind of gift, that they call upon individuals to reach for something inside themselves, to find their better self in order to live in the service of others.
When you look back at your own life, and you peel away the anger and the frustration that you felt, do you think that there were lessons that you took from that or that people are able to take from living with someone who cannot function without the help of others?
Mr. GREENFELD: I think we do learn compassion, and we learn a certain selflessness from Noah, but it's not a lesson that you take eagerly. It's literally crammed down your throat. I mean, Noah will force you to become - to be more patient. Noah will force you to be selfless because you don't have a choice.
So it's a lesson that I never felt like I was grateful for because it was just - it's the kind of lesson you learn - if you're hit by a car, you learn to be afraid of cars, and I feel a little bit like that's - you know, that's the lesson that I got from Noah. And I know that I should try to find whatever redemption there is in Noah, but it starts with looking at Noah's own life and the hardships that he's had and what he's gone through. And it's hard for me to say well, I'm learning so much from this, and that makes it okay because I look at Noah and think, it's not okay. I mean, Noah's a shattered mess.
NORRIS: What message do you want people to take from this book?
Mr. GREENFELD: Well there's two things. There's the idea of - that families are all different. And that each of us or that many of us have siblings or relatives who we don't always know how to act toward or how responsible we have to be for them, and all I'm trying to say in talking about my own childhood is that here's what I did. Here's how I got through it, and here's a little bit of what I learned.
There's another educational point here, which is that idea that there are a lot of adult autistics out there in the world, and there's going to be more if we believe the CDC diagnostic numbers of one in 150, those prevalence numbers. And I don't think we're ready for them as a society, and I don't think we've really begun to focus our attention to what this is going to mean in terms of long-term care and lifespan issues. And part of the great success of the marketing of autism in the last decade has been this idea of autism as a childhood condition.
Well, all these children are going to grow up. Noah was a beautiful boy once, and he grew up. And I don't feel like we're really looking at the implications of that, and I think that's where this conversation, I think, is going to be of some utility because we're all going to be facing this challenge. How responsible am I? How much am I supposed to do? When am I supposed to take over? And that's a conversation that I think needs to happen on a societal level and maybe on a family level.
NORRIS: Thank you so much for coming in to talk to us about this.
Mr. GREENFELD: Thank you.
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NORRIS: Karl Taro Greenfeld, his book is called "Boy Alone: A Brother's Memoir. For more on the book, including an excerpt, visit our Web site, npr.org.