The Right Place for Patrick : Living With an Autistic Child Is Painful, but Getting Him Into a Regular School Can Be Traumatic

PORCELAIN-SKINNED and cherub-faced, Patrick Rudd, like nearly every other baby, babbled constantly. But by his first birthday, the babbling had not progressed to a single understandable word.

Mary and Channing Rudd tried to tell themselves nothing was wrong with their red-haired son. They brushed off comments from friends who suggested that Patrick might have a hearing problem. He was just a late talker, the Rudds reasoned. His sister, Clare, a year older, was a late-talker-turned-chatterbox. “And boys always take longer than girls,” Mary remembers telling herself.

The Rudds focused on enjoying their life in Middletown, a tiny community in Northern California’s wine country. These former San Franciscans had migrated there in 1983 to become winemakers and to raise a family. Despite a recent building boom, Middletown still has a sky clear enough to make the staunchest urbanite rethink the lure of city lights. The town is a mix of old-timers and big-city refugees who say they wish they’d packed up sooner. Within easy driving distance are Calistoga’s bubbling natural spas and pine-topped Cobb Mountain.

At Patrick’s second birthday party, in October, 1987, the knot in Mary’s stomach became too tight to ignore. Her nephew Willie, seven months younger than Patrick, was the life of the party. Patrick was the wet blanket. “He didn’t want to open presents,” Mary says. “He wouldn’t dance. He just wasn’t involved.”

Patrick’s frequent awakenings in the night were another unsettling sign. One night, “he started laughing hysterically over nothing,” Mary recalls. “It freaked me out. I remember holding him and saying over and over, ‘Patrick, stop it.’ But he continued, on and on, for about 15 minutes. It sent a chill up my spine. I thought, ‘What is going on with this kid?’ ”

Six months later, the Rudds sat nervously across from a team of experts at UC San Francisco who had given Patrick a thorough physical exam, a hearing test, a brain scan and developmental tests. “Mary and Channing,” the head of the team said, “I didn’t sleep a wink last night having to tell you this.” Then the Rudds heard the word they knew but had tried to ignore.

“Patrick is autistic.”

AN UNCOMMON DEVELOPMENTAL DISORDER, autism afflicts about 350,000 Americans, according to the Autism Society of America. It affects the way the brain processes information and results in social, behavioral and communication problems. In 1943, psychologist Leo Kanner first used the term autism (combining auto or “self” with “ism”) to describe an inability of certain children to relate to other people. Since then, he and others have put together more pieces of the bizarre puzzle, though they form a far from complete picture. Autism, which occurs more often in boys than girls, can be connected with mental retardation, although some autistic people are extremely intelligent. Autistic children frequently have under-developed language skills, which may or may not improve as they get older. They may have certain repetitive or unusual behavior, such as constant rocking or inexplicable laughing. Some bang their heads against walls or routinely injure themselves in other ways. Some recoil from hugs and other physical contact, but others accept affection. Their life expectancy is normal, but most will require some sort of supervision throughout their lives, ranging from living at home to institutionalization.

Patrick’s symptoms are fairly undramatic. He hums much of the time, but it is a happy hum. He can play with other children or amuse himself; his attention span is brief but not noticeably briefer than that of many 5-year-olds. Occasionally, his mother says, he will get frustrated and hit himself on the head with his hand, but never hard enough to hurt himself. He is an affectionate child who likes to hug his family and friends. He appears to be, for the most part, ordinary, except for his gaze. Patrick can look right at someone with his bright blue-green eyes as if there was no one there. It is the most chilling characteristic of his condition--an almost visible wall between the little boy and the world around him. It is the first clue that something isn’t right.

Although all of Patrick’s tests pointed to autism, the Rudds denied it. “ My son was not going to be autistic,” says Mary, a brunette with expressive eyes the same color as Patrick’s. “It’s like all of a sudden your child, who was going to go to Harvard and play for the San Francisco Giants, is gone. It’s almost like a death.”

“Worse in some ways,” intercedes Channing, who is slender and silver-haired. “Because a disability is staring you in the face every day. It’s here forever.”

On a daily basis, Mary and Channing, like many other families with autistic children, are reminded of the permanence of autism. They rarely get a full night’s sleep, since Patrick, who needs only a few hours sleep, usually awakens at 2 or 3 a.m., and it is almost impossible to get him back to sleep. He speaks in simple five- or six-word sentences, which is considered average for his age, but sometimes the words are garbled. Slowly, Patrick’s vocabulary has grown. But a few months ago, the Rudds noticed that the development is slowing down. Experts say this is typical, that autistic children often seem to make leaps in development, then stall or even regress.

At regular intervals, Mary asks Patrick if he needs to use the toilet; he is toilet trained, but he doesn’t always acknowledge that he has to go. And there is always the need to give Clare her share of attention. “It is like having two only children,” Mary says.

But Patrick is a “high-functioning” autistic, more capable of learning language and other skills than some autistic children. The Easter that Patrick was 3, for example, Channing Rudd awoke to find Patrick’s plastic alphabet letters carefully arranged in a semicircle across the kitchen table, spelling out “The Cavier Family Philanthropic Fund,” a credit Patrick had seen on public television. “He’s a genius!” Channing shouted. Later, the Rudds learned that such displays can be part and parcel of the disorder, although researchers don’t know why.

“All autistic kids have some special skill,” says Ivar Lovaas, a UCLA professor of psychology who has studied autism for 30 years. “Some are good at assembling puzzles, for instance. Some have unusual memory for visual detail.”

The Rudds and their doctors believe that Patrick’s abilities indicate more than just a good memory. “He knows his numbers from one to 50; he knows the whole alphabet,” Mary says. “He knows how to distinguish shapes and colors. I’m teaching him to read, and he’s picking up on that very well.”

Patrick’s seeming academic potential has given his parents hope. When the Rudds read of new developments in the field, attend seminars or talk to other parents of autistic children, they encounter a bewildering array of advice about the best treatments, doctors and therapists. But on one decision, they have never wavered. They want Patrick mainstreamed, or integrated, into public schools.

Realizing that goal has become the second trauma in the Rudds’ lives.

“I thought, ‘I have a disabled child and people are going to welcome me with open arms and help me,’ ” Mary recalls. “And it was the complete opposite. You have to fight for everything.”

The doctors and psychologists who examined Patrick told the Rudds that he should be integrated because he has the potential to learn in a normal academic setting. At a recent evaluation at UCSF, Dr. Bryna Siegel, director of the Pervasive Developmental Disorders Clinic, told Mary that Patrick had progressed faster than most autistic children there.

Local school officials, however, seem to believe that integration is not for Patrick.

For more than two years, the Rudds have locked horns with the Middletown School District in a bitter and complicated battle. The Rudds believe that placing Patrick in a regular classroom is the only way to ensure that he will live up to his potential. School district officials claim that the best place for Patrick is a special education class, although they refuse to say why. With luck, a new hearing, set for March 15, finally will resolve the case.

INTEGRATION of disabled children in general has been debated within the educational community for years. Proponents argue that it is the best answer for children with special needs: If autistic children are placed in special education classes with those as disabled or more disabled than they, they will never achieve their full capability. And, so the theory goes, exposure to people with different abilities will help “normal” children become realistic and empathetic adults.

Many autistic children can cope in a regular classroom, experts say, at least for part of the school day. “Any time that people have seriously tried mainstreaming, it has succeeded,” says Robert L. Koegel, director of UC Santa Barbara’s Autism Research Center. Working with his wife, Lynn Kern Koegel, who supervises the clinic, Koegel has identified ways to make learning easier for autistic children, including minimizing disruptive behavior.

They first identify the undesirable behavior--such as repetitive rocking--and then reward the child for substituting a desirable behavior, like sitting still. If autistic children act less oddly, Koegel reasons, they may also make friends more easily with non-autistic children.

The traditional argument against mainstreaming is that it is detrimental to non-disabled students: If it is harmful for autistic children to be in classes with those who cannot learn as well as they, the same may hold true for “normal” kids. Opponents argue that classrooms are overcrowded and underfunded. And sending an autistic child, who may be disruptive, in with teachers and children not trained to deal with autism will impede everyone’s education.

Wayne Sailor, a researcher at San Francisco State who has developed a model school integration program for autistic children, disagrees. Integration can benefit all students, Sailor and other researchers say. When typical and special education students are in the same classroom, the typical pupils often help the others by drilling them on material, improving their own comprehension in the process. And integration of autistic children does not necessarily mean sending them to regular classes all day, Sailor says. The schedule should be based on individual needs, with students attending regular classes part of the day and special education classes during other time periods. In the Los Angeles and Orange County school systems, integration is fairly common, but critics say it is not progressive enough. In the Los Angeles Unified School District, for instance, 312 special education students have autism as a primary diagnosis, says Eugene Ferkich, coordinator of student services in the special education division. “Ninety-two of these students are in regular schools; the others go to one of 18 special education centers,” Ferkich says.

To integrate a rural child like Patrick however, is more difficult than to integrate a city child, because the districts are smaller and the best classroom setting might be at a school that requires a lengthy bus ride. Removed from research and scholarly centers, small-town residents are often unaware of new education options.

“Rural areas tend to be isolated, and families often don’t have as substantial a support system as they would in a metropolitan area,” says Doris Helge, executive director of the American Council on Rural Special Education in Bellingham, Wash. “A family with a child who has a rare disability is unlikely to find another family in town experiencing the same thing.” (Although in Middletown, another parent, Michele Allen, is asking for home-based education for her autistic 10-year-old son, Jared Jordan. She, too, is embroiled in a legal battle.)

But, Helge adds, rural consciousness about special education has increased in the past few years. Organizations such as hers have been formed, the media has portrayed favorably an increasing number of people with disabilities and public awareness in general has been raised.

But the integration debate is not going to go away because the TV program “Life Goes On” shows the joys of mainstreaming. Families across the country are in the same situation as the Rudds: fighting a school system that seems unable, and unwilling, to accommodate autistic children. “The majority of autistic children are inappropriately served,” says Dan Torisky, president of the Autism Society of America, which has about 7,500 members. As a result, autistic students are not learning as much as they could. Torisky, whose 33-year-old son Eddie is autistic, adds that he does not believe that all autistic children should be mainstreamed, only those capable of learning in that setting.

But, Koegel says, “school districts bluff the parents and try to convince them they don’t have a chance to integrate (their autistic child).”

Helge is not as acrimonious. Sometimes, she says, the school district thinks it is acting in the best interests of the child, and will err on the side of caution. Rural districts simply may be unfamiliar with the type of services requested because they have never heard of them before. “Decisions often come down to personality,” she says. “A small-town school superintendent may not want to cause controversy in the community.”

It is not possible to make hard and fast rules about mainstreaming. “I honestly think integration is usually the best action (for children of all abilities),” Helge says. But, she adds, “it should be done on a case-by-case basis. Sometimes the battle to integrate becomes the goal rather than the means, and then the child suffers. And it should always be about the child.”

THE RUDDS’ SAGA began when Patrick was 3 and the Middletown school psychologist found him eligible for special education. The Rudds first asked the district to pay for Patrick to attend a regular, local preschool held in a church. They expected their request to be granted immediately--since federal law, along with state education codes, mandate a “free and appropriate” public education for children with disabilities, tailored to the individual.

The school district originally agreed, recalls Sally McDonald, a San Francisco attorney. McDonald, Mary Rudd’s sister, is representing Patrick in the suit. Then, McDonald says, the district denied the request because the school was religiously affiliated.

Mary then moved with Patrick and Clare to Burlingame, 10 miles south of San Francisco, where she knew of a preschool class for children with disabilities. Channing stayed in Middletown to work, and the family reunited on weekends. But Mary decided that the class, geared for the severely handicapped, was not challenging enough for Patrick. She also was overwhelmed, she says, by the emotional and financial hardship of splitting up the family. So, eight months later, they moved back to Midddletown.

In another meeting with the district’s psychologist, the Rudds again asked that Patrick be placed within the public school system. Based on the results of Patrick’s various tests, the district offered to put him in a severely handicapped class or a learning handicapped class. The Rudds said that Patrick would not learn enough in either setting.

“Mainstreaming will give him a better chance at a normal life,” Mary says, “In special education, he will be baby-sat and not taught.”

They filed for a due process hearing. In the meantime, they placed Patrick in Sensory Motives preschool, a nearby private facility for ordinary children. They pay $200 a month, and a teacher’s aide is provided for Patrick by the Redwood Coast Regional Center, a state organization that provides services to the developmentally disabled.

At the hearing last July, a school district hearing officer reviewed the material and agreed with the Rudds that the special education classes would not meet Patrick’s socialization needs. The school district appealed the decision, claiming that the hearing officer relied on the testimony of non-educators and overstepped her bounds.

Contacted about the case, Middletown School District Superintendent Robert Slaby agreed to an interview, canceled it and then agreed reluctantly to another. “We are not allowed to say anything about this case,” he says, explaining that it had been routinely sealed. But, speaking in general terms, he says the district is in compliance with the law. School officials have refused further comment.

At the March 15 hearing, the Rudds will ask a U.S. district court judge to rule that Patrick should be allowed to continue attending Sensory Motives preschool--at their expense if necessary--and that the district provide a teacher’s aide, a behavior therapist and a language therapist. “We are thinking of asking to put him in regular kindergarten in the fall of 1991 with an aide (provided by the school),” McDonald says. The aide would not be solely for Patrick, she says, although she acknowledges that he or she “would be busy with Patrick much of the time.”

Mary Rudd admits that it is possible that Patrick wouldn’t progress at a normal pace in a regular school, but she isn’t bothered if he has to repeat a grade. “If he had to repeat,” she says, “it would probably be due to social inadequacies rather than academic deficiencies.”

Although the Rudds hope that this will be the last skirmish in their battle, it is conceivable that the decision could be appealed yet again. They say they are resolved to fight.

Mary offers the only explanation she can imagine for the district’s refusal to grant their requests. “I don’t think they want to spend the money,” she says. “They’ve said to me, point-blank, that they don’t want to set precedent.”

AGAINST THIS BACKDROP of legal warfare, autism researchers call the past five years the most exciting ever. The cause is still a mystery, but scientists have found abnormalities they term important clues. Their findings have, among other things, helped discredit the long-held belief that parental coldness somehow causes autism.

A decade ago, researchers who performed autopsies on autistic brains found a deficiency of nerve cells in the cerebellum, which regulates motor movement and may be involved in the performance of high-level mental skills, like understanding cause-and-effect relationships. But the autopsies could not indicate whether the cells were lacking at birth or if they developed normally and then somehow shrunk.

A few years ago, UC San Diego neuroscientist Eric Courchesne used magnetic resonance imaging to scan the brains of 18 living autistic people. Their cerebellums were unusually small, leading him to conclude that autism is a congenital development problem. Since his study appeared in the New England Journal of Medicine in 1988, three other laboratories have repeated his study. Two reached the same conclusion.

Courchesne’s best guess is that the damage occurs late in pregnancy or soon after birth, but he doesn’t know how or why. Although revealing, these findings have no immediate implications for prenatal testing or treatment. The next step, he says, is to determine why the cells don’t grow correctly.

If the nature of the condition is in question, so is the treatment, which can range from the sublime to the horrifying. Some therapists preach a doctrine of love and acceptance. Others, including the founders of the American Foundation for Autistic Children, cling to aversion therapies such as electric shock. But at the crux of the controversy is the question: Can autism be cured? Experts, therapists and parents fall into two distinct and often hostile camps. The founders of the East Coast Option Institute and Fellowship claim that their autistic son was cured through their program.

“Please, don’t even include them in the story,” pleads Dr. Edward Ritvo, a UCLA professor of child psychiatry who has devoted nearly 30 years to autism research. “For now, there is no treatment for curing autism,” he says. “We’re working on it.” Too often, Ritvo says, he talks to heartbroken parents who have spent their life savings in hopes of finding a miracle cure.

Mary and Channing Rudd understand the magnetism of the word cure . “I had read all the glitz on autism, including information about people who supposedly came out of it,” Mary says. “And I was sure, absolutely sure, that Patrick was going to be one of those miracle cases.”

But eventually, she says, the full impact of the diagnosis sunk in, and they had to stop counting on a miracle.

Married 10 years ago, the Rudds seem exact but happy opposites. She is outgoing and gregarious; he is reserved and soft-spoken. They met in 1977 when they both worked at a San Francisco wine company. He was smitten immediately; she was reluctant to encourage a relationship. It wasn’t the fact that he was 10 years older, says Mary, now 37. Her staunch Irish Catholic upbringing made it difficult to accept the fact that Channing was divorced. He persisted and eventually proposed.

Patrick’s condition has wreaked havoc on the family bank account. Mary estimates that the tests leading up to the diagnosis, including a second opinion, totaled $7,000. Their insurance plan covered just $600. To make ends meet, Channing works three jobs: He runs their small winery, does graphic illustrations for other wineries and designs cedar homes. Despite the bills, they have decided to go ahead with plans for their dream home, a cedar model that Channing is helping to construct. But the financial hardship is minor compared to the emotional trauma.

During the conversation, Patrick strolls in from his bedroom, where he had gone a few moments before to play. Balancing a bowl of Cheerios in his hands, he sits down at the table next to his sister, who has been listening in rapt attention. “What are you eating?” Patrick is asked. For what seems an eternity, his piercing eyes look right through his questioner. Then he turns his gaze to Clare, as if seeking help. “Cheerios,” she quickly answers for him.

Delicate-looking, with light-brown hair, Clare is an extroverted charmer. Like most big sisters, she admits that her brother can be a pain. But the mother hen inside surfaces quickly, Mary says, when anyone speaks against Patrick. Recently, a classmate told Clare she didn’t want to play around Patrick. Clare’s reply was frank and firm: “Then I can’t be your friend, because he is my brother.”

“We worried that they wouldn’t have a normal sibling relationship,” Channing says. “But they seem to have an extremely strong bond, which is wonderful. Sometimes I think it is even stronger than the parent-child relationship.”

AT IVAR LOVAAS’ Clinic for the Behavioral Treatment of Children in the UCLA department of psychology, student therapists help reshape autistic children’s behavior and build their vocabulary in hopes of preparing them to enter public school. They teach the technique to parents, who eventually take over at home.

“We assign (children) 35 hours or more of one-to-one treatment per week, 50 weeks a year, for two years or more,” Lovaas says. The intensity is vital just to help autistic kids even begin to keep up with non-autistic peers, he contends. “Average kids learn from the minute they get up until they go to sleep.”

Lovaas’ critics are quick to condemn him because of his previous use of electric shock therapy, and some suggest he still employs it. Absolutely not, Lovaas says. He abandoned the treatment decades ago when he decided it was ineffective and harmful.

On a recent weekday afternoon, 4-year-old Billy arrives at a session dressed in a turquoise sweat suit. His student therapists lead him to a tiny chair in the middle of the room. The first therapist sits opposite Billy on another child-sized chair.

“Billy,” he says firmly, “look at me. Doughnut.” When Billy repeats the word, the therapist grins. “Very nice!” he says. The feedback is echoed enthusiastically from the other therapists, sitting on sofas surrounding Billy. “Billy! Very nice!” When he grabs for a book, his therapist takes it away and guides Billy’s hands back into his lap. “Hands quiet,” he says firmly.

Coached in turn by the other therapists, Billy is asked to demonstrate his knowledge of anatomy by touching his shoulders and other body parts. He is asked to imitate a cowboy, an airplane, an Indian, a cow and a tiger.

When Billy performs well, he is given a bite of Jell-O or allowed a few minutes to play with the toys in the clinic room.

At the end of the session, Billy is tired but smiling. Diagnosed at age 3 as autistic and mildly retarded, he has attended the weekly clinic for a year. But it is unlikely that the boy will ever be integrated into a regular classroom, says psychologist Tristram Smith, assistant director of the clinic. Before a child enters the program, “there’s no way to predict who will do well,” Smith says. “We just don’t know who’s who until we’re finished.”

But the next clinic visitor, Juan, probably will be able to learn in a regular classroom, Smith says. The slender 4-year-old, snappily dressed in a white shirt and gray dress pants with black suspenders, sits opposite his therapist.

“Tell me three things about Halloween, Juan, “ she asks.

His dark brown eyes light up. “We have a pumpkin,” he begins, a grin tugging at the corners of his mouth. “We have a party. We get lots of candy.” His parents, sitting on the couch behind him, beam. Through a translator, his mother recounts the family’s recent trip to Tijuana. “He knows when to speak English and when to speak Spanish,” she says proudly.

In Massachusetts, another program takes a different approach. At the Option Institute and Fellowship in Sheffield, directors Barry Neil Kaufman and Suzanne Kaufman insist they have cured their son, Raun, now 18, and have developed a program to help other parents do the same. “We worked with our son in a totally loving, accepting program in which we entered his world rather than forced him to be part of our world,” Kaufman explains in a telephone interview, speaking in well-modulated, persuasive tones. “We created a bond and a bridge, and then walked him back to this world. And we did it by working with him 12 hours a day, seven days a week, for just about 3 1/2 years.”

In the Kaufmans’ Option Process program, families stay one week to six months, paying $3,500 to $5,000 a week. For that fee, Kaufman says, families learn how to “build bridges” between their world and the autistic world. They do this, he says, partly by mimicking their child’s behaviors, repetitive rocking, for instance, to show they are trying to understand the disorder. “Autistic kids sense that acceptance. It looks as if they sense it, anyway, because they (then) seem more responsive in terms of bonding and allowing physical interaction. They are more responsive to developing eye contact, which is vital for learning language.

“Autism is defined by a constellation of behavior patterns that are fairly sustained and demonstrative,” Kaufman says. “A cure to me is if that person no longer at any time exhibited any of those behavior patterns whatsoever.”

As proof that the program works, Kaufman points to Raun, who he says has a “near-genius” IQ level and is applying for admission to Harvard. Asked if Raun could be interviewed by telephone, Kaufman says, “Normally we really don’t do that.” But he promises to ask his wife and son and call back. Later, a spokeswoman calls to decline, saying, “As long as the article isn’t focusing on the institute . . . they feel it wouldn’t work in terms of being useful to Raun.”

Michele Allen, the Middletown parent of 10-year-old Jared Jordan, had nothing but praise for the Kaufmans’ program after she went through it and plans to continue using the process at home.

“Cure is a hard word for me,” she says. “There has been a lot of improvement.”

But others blast the program. “I can categorically state there is no cure for autism,” says UCLA’s Ritvo. “There is no treatment we have that changes or modifies the natural history of the disease in any given patient.”

Koegel of UC Santa Barbara is less critical but not enthusiastic. “I’ve worked with kids who have been cured, who have gone to college and excelled in life,” he says. “But my reaction (to the Option program) is guarded.”

Kaufman remains doggedly upbeat. He dismisses nonbelievers, saying, “It’s like you don’t believe you can get to the moon, so the best you can do is climb a little hill.” And before he began the telephone interview, he had asked brightly, “Is this going to be a happy story about autism?”

ADULTS SEEM to have more trouble dealing with autistic children than children do, Mary Rudd says. “The kids are totally accepting,” she says of Patrick’s classmates at Sensory Motives. “They know what his limitations are. They find ways of pulling him in. The other kids call him artistic, which cracks me up. They will say, ‘That’s OK, Patrick did that because he is artistic.’ ”

“When Patrick first came, he screamed all the time,” says Dawn Felperin, preschool director. “Now, he joins in groups. Today, he has not screamed at all.”

On the ride home from preschool, Patrick sits in the back seat of Mary’s Subaru. His eyes seem to take in flashing bits of foliage as Mary maneuvers the car over the twisting roads. He begins humming in a low monotone.

Once home, Mary remembers to tell Channing about a previous day’s incident. On the way home from preschool, Patrick had cried out, “Mommy! Trees! Beautiful trees!” The speech wasn’t quite clear, Mary admits, but she understood.

The Rudds have learned to appreciate such small bits of progress, to measure success in new words or phrases or a slightly longer attention span. “And Patrick is developing a sense of humor,” Mary says happily. At preschool, the teacher’s aide held up an umbrella with a curved handle and asked Patrick to identify it. “The number 6!” he replied devilishly, laughing at his wit. “He thinks he’s a scream,” Mary says.

The Rudds’ attention now is focused on March 15. Looking too much farther into the future is frightening, they say. But they know they must, eventually.

Ten or 15 years from now, what do they see and hope for Patrick?

Mary wrestles with the question. “I change (my mind) from day to day,” she says. “My hope is that Patrick will be in some kind of normal academic situation.”

Like many other families with autistic children, the Rudds say the thought of placing Patrick in an institution--a good choice for some autistic people, experts say--is too sobering to consider now. “The ultimate would be for Patrick to live on his own,” Mary says. “Realistically, I don’t think that’s going to happen.

“In 10 years,” she says softly, “I just hope we are all still together.”