UNRAVELING AUTISM'S COCOON Boy begins to emerge with new therapy

THE BALTIMORE SUN

In an unadorned 10-by-12-foot room in the basement of his parents' Jacksonville home, 7-year-old Billy Noon lives in his own world.

His friends have spent thousands of hours trying to coax him back to this one. They've been at it for more than a year.

Now -- encouraged by an occasional smile, a nod, or an unexpected response -- they're beginning to find their way past the frayed outer edges of an autistic child's universe.

Linda Reeves, one of the 15 friends who have dedicated time and emotional energy to an intensive form of therapy constructed for autistic children, wrote a parable about the journey. It begins:

"The fearless adventurers set out to find their young friend Billy. He had wandered across the Bridge to Nowhere, and they knew he couldn't find his way back without their help."

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William John Noon III was born at the Greater Baltimore Medical Center at 6 a.m. on Nov. 8, 1985. He weighed 7 pounds and was the second of Billy and Denise Noon's three children. The nightmare began almost immediately.

"Billy cried all the time. He slept about two hours a day. He ate just enough to keep himself going, and he had constant ear infections," said Mrs. Noon, 37, a former buyer for Crown Central Petroleum Corp.

After three months, the Noons took him to a behaviorist at Sinai Hospital, who diagnosed Billy as a "difficult child," something they already knew. The doctor offered no solutions. The Noons hoped he would outgrow it. He didn't.

He walked and talked on time, but the incessant crying continued. His parents knew something was wrong. After a year, he weighed only 14 pounds. At the age of 2, he started to withdraw.

The Noons took him back to Sinai. This time the diagnosis was stark and defeating. Billy was autistic.

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Autism is one of nature's most puzzling conditions. Even the dictionary definition is vague: A mental state marked by disregard of external reality.

Medical references are frightening: The cause of autism is unknown. Any disruption of a compulsive routine may result in explosive rage. Self-mutilation, even to the point where it is life-threatening, is fairly common. The outlook is guarded. Most require lifelong shelter and care.

The Noons were crushed.

"Most of what we read was so bad," Mrs. Noon said. "Is this going to be our life? No hope, no future? Will I have a child who doesn't care about us, who doesn't even know us? I would look for positive things to put in his baby book, but I had a lot of blank pages."

It got worse.

"Billy began to have wall-to-wall tantrums," she said. "Anything would set him off. He became hyperactive, he wouldn't sleep. We couldn't communicate with him. My husband is a wonderful dad, but he would sometimes get up and go to work at 3 in the morning."

At 3, Billy began attending White Oak, a Baltimore County special education school. "The teachers tried hard and were wonderful, but Billy was beyond them, he was beyond us," Mrs. Noon said.

Bill Noon, 37, a sales representative for the Packaging Corporation of America, said the couple tried other standard treatments with doctors in Arizona, Buffalo, and finally at Johns Hopkins.

"Billy just kept getting more distant," he said, "but we never considered an institution. We were looking for alternatives."

Hope arrived in the mail.

"People would send us little articles on treatment for autistic children," Mrs. Noon said. "We received this article from a friend about this family in Massachusetts that had had some success with autistic children."

It was a story about Barry and Suzi Kaufman and their son, Raun, who at age 1 1/2 displayed the classic autistic symptoms: self-absorption, withdrawal, repetitive motions, total inability to communicate.

Doctors told the Kaufmans that Raun had no future outside an institution.

Today Raun is a sophomore at an Ivy League college.

The Kaufmans' approach was simple but tortuous: They spent 12 hours a day with Raun for 3 1/2 years, imitated his rituals, tried to understand what motivated him, and showed him they accepted his behavior. They improvised as they went along.

After eight weeks, Raun began to express himself, and after 3 1/2 years he was able to attend kindergarten.

Eventually, the Kaufmans developed a program they thought would work with other autistic children. They bought an 85-acre farm in western Massachusetts, where they now treat adults and children with a variety of disabilities.

"The program is based on attitude," said Melany Kahn, a spokesman for the Kaufmans. "Attitude is no more than how you feel about a given situation. You have to see the autistic child as perfect, and that it's OK for him to do whatever he wants to do. It's training through following and supporting his movements, not coercion, so you can get him to see that your world looks pretty good too."

Taking a gamble

The Noons, going nowhere and faced with a hyperactive, unresponsive 5-year-old child who seldom slept or ate and who fell into vicious tantrums for no reason or any reason, decided to throw the dice to win back their lives. They applied for entrance to the Kaufmans' program.

In September 1991, the Noons went to Massachusetts with Billy for a week of instruction. It cost $5,000.

When they returned, they assembled a group of 15 people under the guidance of the Kaufmans, who came to their home for a long weekend in December 1991, to train the volunteers.

It was a diverse group of friends and neighbors, members of the Noons' church, and people who had just heard about Billy and wanted to help. The group included teen-agers, homemakers, a college student, a nurse, a teacher, a semi-retired man, and two sisters -- Linda and Ann Reeves -- who drive from Ellicott City to spend five hours with Billy every Saturday.

The instructions were simple but demanding: Be present; get rid of all other distractions. Whatever kind of day you're having, the minute you walk into the room, you are with Billy in a nonjudgmental way. Every little thing Billy does is wonderful -- let him know. Try new things; if it's the same old thing day after day and you're bored, he probably is too.

Peace and quiet

A small, isolated room is important. Autistic children shut down when there are distractions. The Kaufmans used a bathroom. The Noons had a room designed and built for Billy in their basement.

It has a tiled floor, plasterboard walls, and recessed lighting. There's a high window on one side, and two shelves filled with stuffed animals and children's books on the other. The toys are out of reach because the Noons want Billy to ask for them, which he does by sounds and motions.

You can see Billy through a mirrored door, moving in circles, his arms outspread. He can't see out, but you can see in. He comes to the door, suspecting someone is in the hall. He tries the handle, but it's locked.

He stares in the mirror, expressionless, then goes back and lolls against his mentor of the hour, Sue McCreary, a mother of three who spends four hours a week with him, and with whom Billy has obviously made a compact. She tries to get him interested in a book, but he just fans the pages briefly and leans against her some more.

"He's very fond of Sue," Mrs. Noon whispers, smiling, watching intently for the small signs of progress that give meaning to her life.

Mrs. Noon opens the door and politely asks her son if a visitor can come in. There's no response, just an expressionless, open-mouthed stare. But there's an eerie feeling that Billy is reading the visitor from head to toe as he steps into the room.

Billy takes the visitor's hand by the little finger with a touch so gentle it is barely felt, leads him into the hall, and firmly closes the door.

"You've been thrown out," Mrs. Noon says, laughing again. "Let's see what happens."

Billy stands by the door, his head slightly bowed, clearly thinking things through. When his mother opens the door again, Billy reaches out, takes the visitor by the same finger and leads him inside. Mrs. Noon is exhilarated. It's movement -- a millimeter at a time.

"A year ago, he might have gone into a corner, or covered his face or ears with his hands, or used his head to butt you, or he might have thrown up on you," she said.

Now Billy shows his emotions in different ways. There are the laughing encounters with his sister, Kelly, 9. There's jealousy of his sister Jenny, 2, which he shows by hiding her videotapes or expressing annoyance when she sits in her mother's lap.

There's another sign of progress. Billy can handle a VCR better than many adults. And one more: he sleeps through the night.

But he still won't talk, making sounds that only resemble words. Last week, the family thought he said the word "Ingrid," meaning Ingrid Meiser, 23, who lives with the family and spends many hours with Billy. That became a major subject of conversation.

And Billy is still not toilet trained: "We take one problem at a time," Mrs. Noon said.

Volunteers gain perspective

"Billy, would you like to shake hands?" she asks. Billy extends a hand, haltingly, blank stare still there, and allows the visitor to touch his hand before departing.

So now Billy understands some things, and reacts so well Mrs. Noon can say he is the best thing that ever happened to the family.

The experience has been a two-way street for those involved.

Donna Lawrence spends one intensive hour a week with Billy. "It puts things in perspective for me because I have a daughter, Kristan, 7, the same age as Billy," she said. "Things that used to upset me no longer do. Billy responds to me, and makes me feel better about myself. It's very rewarding."

Linda Reeves, one of the sisters from Ellicott City, hopes Billy's story will turn out like the end of her parable: ". . . there were Mom and Dad, Jenners, Kelly and Inga (also known as Ingrid), Gramma, Nanni, Poppy and Poppy.

"They knew at once that Billy has changed. [They'd seen his new tuxedo.]

" 'Speech! Speech!' they clamored, excited to be reunited.

"Billy looked around at all the people who loved him. And with a smile as bright as the Noon-day sun, he shouted:

'We did it!' "

FOR INFORMATION

The country has more than 360,000 autistic children and adults, according to the Autism Society of America. For information on research, education and referral, write: ASA, Suite 503, 8601 Georgia Ave., Silver Spring, Md. 20910, or call (301) 565-0834. To contact the Kaufmans, write to them c/o Option Institute and Fellowship, R.D. No. 1, Box 174A, Sheffield, MA 01257, or call (413) 229-2100.

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