http://www.nytimes.com/2003/06/10/health/10AUTI.html?ex=1056340800&en=eb2d8927be5b7ed0&ei=5070

'David Is David': Growing With an Autistic Brother

In a new book, "The Ride Together: A Brother and Sister's Memoir of Autism in the Family," Paul and Judy Karasik tell the story of growing up in a tall Victorian house in Chevy Chase, Md., with their parents and two brothers, Michael and David. David, the oldest, is autistic and mildly retarded, and the book follows him as he grows from infancy to middle age. (He is now in his 50's and lives in a group home near Washington.)

Excerpts follow; the first is set in 1960, the second in 1966. Judy Karasik narrates; the cartoons are by Paul Karasik.

"How come David never has to clean up his room?" I asked.

Michael opened up the door to the toy furnace and blew out the ghostly fire hovering over the small white bricks of solid fuel. He turned a lever, steam hissed out from the water tank, the shiny silver pistons reduced their pace, and the engine's wheel stopped its spinning.

"What are you talking about?" he asked. "Look at the wheel slow down, Judy," said Paul, whose mind had remained on the steam engine.

"He gets special treatment," I said. "That's not right. It's not fair."

"Huh?" Michael asked, puzzled. "Oh yeah," he said, as his brain stretched around to include my way of seeing things. He pulled open the door to the furnace, lit another match, and reached in to reignite the cube.

"Well, Judy, David is David," Michael said. "You know who he is."

The fuel took. Trembling smoke-shaped flames chased one another along the brick's length.

"It's not fair," I said. "It's always like this. We get one set of rules but he gets another."

David didn't have to make his bed, rake leaves or clear the table. He interrupted. He had his shows. He ate more cookies than anybody else. It wasn't right and we had done nothing — just sat there and watched — while first Mommy, then Daddy, then Mommy again, made exceptions for David.

"Fairness is important," I said. "Michael, here's this huge unfairness, right in the middle of everything. Every day."

Paul turned his attention away from the engine for a moment. "It has to be fair," he said.

Michael shook his head. "Judy, it is not a big deal. You make such a big deal out of stuff." . . .

"Somebody needs to ask them why."

"So go ask them, that's O.K.," Michael replied, increasingly annoyed. "I'm busy." . . .

Mom turned her attention to me and said, in a matter-of-fact way: "Well, Judy, David gets some things easier because a lot of ordinary things are harder for him. Getting through the day is harder for David than it is for the rest of us."

"Hard?" I replied. His life didn't look so hard to me. "Mommy!"

My mother paused. "You know the way you look at something, Judy, and it's just there? Or the way you hear something, and it's just a sound? What David sees or hears breaks into a lot of little pieces before it gets to him. So he needs to put it all back together. This goes on all the time, and it's a lot of work. The parts of his brain are the same — it's the way they're connected that's different."

I stopped arguing. There were times when I could almost see the gears in David's head spinning, as he said the same things quickly over and over, his hands dancing in the air, sometimes drumming on his head. No wonder.

"Things arrive splintered," said my mother. She was about to continue but I interrupted.

"O.K., Mom, I get it."

I stood there for a minute. Just as I had taken the dirty clothes from my floor and put them into the hamper, I moved David from one classification to another. He went from being an incomprehensible pain in the neck to someone who, although an incomprehensible pain in the neck, had a tough situation and needed protection. Poor David. And all that was wrong was the wiring. Otherwise his brain could have been mine. And vice versa.

"O.K., Judy?" asked my mother. "You sure?"

"Yeah, I guess," I said, somewhat begrudgingly.

"O.K., then," she replied, whereupon she returned to fixing the table. I went back upstairs, past David doing his show, to report. I found my brothers in the upstairs back bathroom. Michael was making sure that Paul, who had touched the fuel cube, got his hands clean.

I explained what I had been told.

"That's great, Judy," said Michael. "That's what I said. David is David."

Paul turned to Michael. "Blow on my fingers," he said. They had been singed by the hot cube.

Michael blew, gently.

"Does that feel better?"

Paul nodded.

•

We sat down in the grown-ups' living room and our parents explained to us that David was coming back home.

The nine-month trial had failed.

"He just couldn't make it at Camphill," said Mom.

"So it's like he flunked out," Michael commented.

"I guess you could say so," replied Dad. "It's a good place —"

"Really one of the best, we think," Mom added.

"But there wasn't enough structure at Camphill Village," continued Dad.

David had flunked out, I thought, just like Michael said. He couldn't make the cut. He wasn't a cooperative and attractive retarded person like the people who lived in the fairy tale of Camphill, he was just our brother.

"You kids know how David needs things to happen in an ordered way. The program is ordered at Camphill, but it isn't ordered like David," said Dad.

"And the program expects the villagers to participate in cultural and other activities, to get involved with the philosophy behind the place," Mom explained. "And you know, David already has a lot going on in his head. He needs time to himself and he's not so flexible about that. So there's been frustration on both sides — and one of the results has been that about every month, David has gone out of control, violently. They don't have the people there, the levels of supervision, that would be needed to keep things safe for everyone, David included."

Michael and Paul and I all knew what David was like when he was out of control. He started by rapping and fiddling his fingers on his skull, as though he were revving an engine. If whatever was going on inside of him got worse, he attacked people — it didn't always make sense who. He could pull your head to his and grind his forehead against yours, repeating the names of people who didn't exist outside of television. It hurt.

The three of us nodded, listening to our parents, thoughtful, so good on the outside, and so disappointed and discouraged and disgusted on the inside.

My adventure in normal life was ending. I would need to be able to predict with some certainty that the friends I invited over the house could handle David, that they would be cool enough to act as though he was like everyone else if he was having a good day, that they would be smart and fast enough to get out of the way if he was upset. I would have to know if people liked me before I invited them over to the house, because kids who didn't could say things about David behind my back after they left, things I didn't like to imagine but which made me murderously angry when I did. I had to protect him. We all did. We could have only friends who were very, very loyal. Only insiders.

I would have to be nice about the little things, which can be the hardest things to be nice about; not getting the extra piece of pie, but letting it go to him; not minding the noise of the shows, the shows that happened whenever David wanted them to; not getting a ride to the bus, but walking down there and back.

Even worse, it was completely clear that we were doing the right thing. David couldn't endanger other people at Camphill — that wasn't O.K. David couldn't get sent back to Burgoyne, which wasn't a good place for him — that, too, was clear. We were lucky to be flexible enough to keep David at home if that was what was needed; most families with people like David had to send their Davids away, and send them to bad places.

Finally, David deserved to have a family, just like the rest of us. I knew that, in an unpleasant way, this was going to make me a better person, that I deserved to have David as he deserved to have me. It was just that right then and there I didn't want to be a better person. I wanted that ride to the bus.

"So he's coming home," said Mom. "There's a program we have in Montgomery County, a day program, the one he was in before, and David has been accepted back into that."

We understood. David was coming home and life would change again. We would all need to operate around him.

"Your mother and I, it's our responsibility to find a place for David," said Dad, "and so we shall. A permanent place, somewhere he can make a contribution. Everyone needs to be able to make a contribution."

"But we're sure there are other options out there," Mom added.

"You kids should not worry," said Dad.

"It's only temporary," said Mom.

I knew we couldn't count on that to be true, and so did Paul and Michael.

Copyright 2003 by Judy Karasik and Paul Karasik. From "The Ride Together," published by Washington Square Press, a trademark of Simon & Schuster Inc. Reprinted by permission.

Copyright 2003 The New York Times Company