After a Troubled Past, Autistic Home Reopens
Suspicion and anger have followed the Behavior Research Institute from the beginning. What was supposed to have been a haven for forgotten children has become a battleground.
Autistic children live at the institute, children rescued from the back wards of state hospitals. These are normally placid children given to unexplained wailing and thrashing, bloody tantrums. The institute opened in 1977 to treat them with a controversial technique called aversive therapy.
The purpose of this therapy is to use rewards and punishments to discourage “inappropriate” behavior. At the institute, the punishments have, over the years, included pinching children’s feet and arms, spanking them and spraying cold water in their faces. Proponents of the therapy say such measures are necessary to help severely disturbed children. Others say aversive therapy is nothing less than child abuse.
The institute was first located in a ranch-style house on a quiet Northridge street. Neighbors told stories of crying children who fled into the street only to be caught by staff members and taken back inside. There were screams in the early morning--noises that sounded like someone being stabbed to death, the neighbors said.
Boy Found Dead
At times the staff felt as though state health inspectors and county investigators were watching every minute of every day. In 1981 a 14-year-old boy was found dead, strapped to a bed in the home. Critics said their worst fears had come true, but a coroner’s inquest concluded that the child died of natural causes. The state, which had begun a full-scale investigation before the death, placed the institute on two-years’ probation.
Last spring, when at last it seemed that the critics had quieted, the pressure had eased, a disgruntled employee burglarized the institute and set it afire. Staff and children were sent running into the night.
But the institute survived. In fact, it has flourished. After several months, the children and staff have returned, moving into a four-bedroom house set against brush-covered hills in Sunland. Two additional homes and a day school recently opened in Northern California, near Oakland. The Behavior Research Institute is back in business.
David Bristow teaches morning class at the institute, moving quickly from desk to desk. The students in this room--the lower-functioning group--lean over pegboards or colored blocks, sometimes working intently at the coordination tasks, other times staring blankly into space.
Only about five of every 10,000 children are affected by autism and no one knows what causes the disorder. Researchers now suspect that it may be neurophysiological, something to do with the transmission of nerve impulses throughout the body.
The outward characteristics include severe withdrawal interrupted by sudden outbursts of violence against themselves or others. Ritualistic head banging, rocking and teeth grinding are common in autistic children. Some can become marginally self-sufficient and independent. Most require lifelong care in either a state hospital or private home.
Six boys from the ages of 15 to 22 live at the institute in Southern California. Five other children are bused in daily by the Los Angeles Unified School District to attend the institute’s summer school, taught down the block at a former home for asthmatic children.
Bristow, 30, keeps moving from student to student. Jack, at 15 the youngest resident of the institute, slaps his face and cries out loud. Sharon, a newcomer, lies beneath a table, refusing to get up. Curtis mumbles over and over that he wants to go swimming. Jeff watches. The teacher keeps up a constant banter, speaking in a lazy Texas drawl. With a change apron tied around his waist, he looks and sounds like a carnival barker nearing the end of the summer season.
“No crying, Jack. No slapping your face. Sit down, Curtis.”
Jeff, 18 and muscular, strikes out at Bristow. The teacher calmly sidesteps the punch. Last month, Jeff broke another teacher’s nose. It was the sixth broken bone he has inflicted on the staff in three years, Bristow says.
“No hitting, Jeff. Work on your task, Curtis.”
Jack has finished sorting a pile of colored pegs. Bristow reaches into his change apron and tosses a penny into Jack’s cup. It is a reward. The penny can be spent on candy or toys later in the day.
“What’s your contract for, Jack?”
“Not hitting my face,” Jack answers.
Another penny clangs into the cup.
“What do you get if you don’t slap your face all morning?”
“Round Table pizza.”
The wounds on Jack’s cheeks where he had slapped his face until the skin split open are beginning to heal.
“Where are you going, Curtis?”
The obese boy with a wide grin and silver front tooth has jumped from his chair and is lumbering toward the door. Bristow springs after him, catching Curtis in the hall and pulling him back inside by the sweat shirt. The teacher tickles the boy, who bends over in giggles.
“You think you’re going to get away from me, Curtis?”
Bristow says the job is one of caring and constant bargaining, trying get the children to learn to behave. Bristow says the institute staff emphasizes rewards these days: pennies, jars of candy and bread sticks, the promise of an afternoon swim.
“We’ve certainly had our share of hardships the last three years,” he says. “If it’s not the state inspectors, it’s the money. If it’s not the money, it’s the house burning down.
“But the bottom line is the kids. You’re in it for the kids.”
There was a time when state officials believed that California would be better off without the Behavior Research Institute.
“It was a horror story,” said Marsha Jacobson, a staff attorney with the state’s Community Care Licensing department in Sacramento. “I don’t know if it was the worst, but it was right up there on the list.”
Problems within the home first became public in 1979, when a staff member quit and asked the district attorney to file child-abuse charges against the institute. In the ensuing investigation, the worker told of an incident during which a child who had soiled his pants was pinched repeatedly on the soles of the feet for 45 minutes. The child’s feet, the former staff member said, were left blistered and bruised for days.
At about the same time, the state launched an investigation prompted by numerous allegations from former staff members, social workers and others who believed the institute’s form of therapy amounted to child abuse.
State officials attempted to rescind the institute’s license, but their effort was turned back in court. Then came the death of 14-year-old Daniel Aswad. Aswad had been restrained at the home because he would repeatedly gouge his eyes with his thumbs, Judith Weber, who owns the Behavior Research Institute, aid.
Shortly after the death, with the state’s continuing its investigation, a settlement was reached. In a unique agreement, about 20 pages of procedural do’s and don’ts were added to the institute’s operating license.
“They can’t hit, slap, pinch or use any type of physical punishment,” Jacobson explained. “They may not use restraints. The most severe form of punishment they are permitted to use is a vapor spray on the cheek or back of the neck.”
These requirements were initially in effect for a two-year probation. At the end of that probation, the institute and state agreed, the list of do’s and don’ts would become the home’s permanent rules of operations. At least, that is what state officials hope.
“We’re not there 24 hours a day,” Jacobson said. “I think the program is substantially different from the time when we took the revocation action. You’re not likely to get me to say this place is wonderful, but it has substantially improved.”
The state, in a circuitous way, pays the $64,000-a-year tuition for each of the institute’s residents. Children are placed in the home by regional centers, a network of private, nonprofit organizations that work under contract with the state to oversee the needs of California’s developmentally disabled.
Fifteen years ago Weber was told that her then 4-year-old son, Tobin, was autistic. Weber could not keep him at home, nor could she bring herself to commit him to a state hospital. She traveled the country looking for a suitable private home. Finally, frustrated in her search, the then 36-year-old housewife and PTA mother established her own home for autistic children, the Behavior Research Institute.
The institute was modeled after a facility of the same name Weber had visited in Providence, R.I. That East Coast program espouses more severe physical punishments and is now in court fighting to stay open. California state officials have forbidden Matthew Israel, founder of the Rhode Island program, from setting foot inside Weber’s homes.
Weber’s homes are not the only ones in California to employ aversive therapy. Saying “No!” is considered an aversive punishment, and many homes use verbal punishments. However, the institute is the only private program in the state that physically punishes children.
Hot Sauce on Tongue
The punishments have been lessened lately, Weber and her staff say--an occasional spray of cold water in the face or a teaspoon of hot sauce poured on the tongue. They insist that punishments are used only after rewards alone have proven futile. The institute people contend that punishments are vital to their work, especially with the types of children that are brought to the home.
“Most of our kids have been thrown out of every program in the state. If not for this program, these kids would be in state hospitals,” Weber, now 51, said. “Do you know what they do to them there? They pump them full of medication until you get these kids who become zombies. I’d much rather have my child sprayed on the cheek.”
Weber and her staff insist that aversive therapy works. Parents interviewed back up Weber’s claim that the children at the home are improved and happy. Those close to the Behavior Research Institute wish the state and the critics would leave well enough alone.
“It’s been hard to stand by what we believe,” Weber said. “Aversives are an acceptable form of treatment, and we use them very carefully.”
The pale, fair-haired woman leaned forward, her hands held out.
“We are a place of last resort. We take the toughest cases. If we don’t work with them, who will?”
Jose Maltos, executive director of the Regional Center of the East Bay, placed Jeff and Jack, both of whom come from the San Francisco Bay Area, as well as 12 new students who have just moved into the Northern California homes. Maltos said he believes the institute is controversial only because it must use strict methods to handle cases no one else will take.
“We came across BRI about four years ago and I have seen the care they are giving, the well-trained staff and their commitment,” said Maltos, who said he has visited the Southern California home 10 times in the last four years. Jeff and Jack “would be in state institutions if it weren’t for BRI,” he said.
Jacobson argued that there are plenty of autistic children’s homes in California--such as the Jay Nolan Center for Autism in Saugus--that are successful in treating difficult cases without using physical punishments.
“With an extremely challenging, positive program that keeps the clients interested and motivated, aversives are not necessary,” said Glenys Reid, director of residential services at the Jay Nolan Center. “That’s the philosophy on which we work.”
There were few visible instances of physical punishments during a recent day at the home. The most severe punishment used was forcing a teen-ager to sit alone in a room during dinner.
Bristow and his staff scoff at suggestions that they have abused children. According to Weber, the list of aversive procedures now used, although slightly different for each child, reads: “NO!” Verbal commands are the first step in aversive therapy. After that, the child may lose a privilege such as noontime swimming or an afternoon field trip to the zoo.
“The plant sprayer.” A three-second spray of cold water on the cheek or neck.
“Bad taste.” A spoonful of hot sauce.
“Time-out room.” The child is shut in a room alone for time to cool down. “We hardly ever use that one,” Weber said.
“Cold Shower.” The usual punishment for wetting pants.
“Vapor Spray.” Like the plant sprayer, but using a compressed-air sprayer.
Other aversives, Bristow said, include forcing a child to eat food he doesn’t like. Mark, one of the more severe cases at the home, must eat scrambled eggs as a punishment. “He hates scrambled eggs,” Bristow said. And there is the “Big Red Chair,” a high-back chair where the kids are held down by staff members during tantrums.
The state forbids staff in licensed homes from forcing physical punishment on a child. Experts say autistic children will often meekly submit to punishment.
“I’m not teaching these kids to tie their shoes,” Bristow said. “I’m teaching Jack not to beat himself half unconscious or, in the case of Jeffrey, not to beat somebody else half unconscious.”
Aversive therapy as a treatment for autism was studied extensively by Dr. Ivar Lovaas at UCLA in the early 1960s. It was a relatively accepted practice in those days. Since then, physical punishments such as spraying water and forcing children to eat undesired foods have come to be considered unethical by most of those who specialize in caring for autistic children, said B. J. Freeman, an associate professor of medical psychology at UCLA.
“Nobody believes in doing this anymore,” Freeman said. “Those of us in the field consider it child abuse. Once you hit a child, you have to do it forever. Once you stop, the behaviors come back.”
Verdict Not in Yet
Henry Slucki, a USC professor of psychology and behavioral science, disagreed: “I don’t think the final verdict has come in from the professional community.”
Slucki is a volunteer chairman for the Behavior Research Institute’s peer review and human rights committees. He argued that the use of physical punishment must be evaluated case by case. Punishments, though not always desirable, may be necessary in conjunction with positive reinforcements to help some autistic children, he said. Slucki equated the therapy to getting a medical injection.
“It’s painful, but we’re going to give you this penicillin because your life depends on it,” Slucki said. “To do anything but that would be cruel.”
Slucki also said he believes the institute has received undue criticism.
“When you’re dealing with a frontier treatment, you’re always going to face criticism. But it takes gutsy people to say, ‘We believe in this and we’re going to forge ahead,’ ” he said. “Instead of being criticized, these people should be recognized as pioneers.”
However, according to Freeman, recent studies show that positive therapy, using rewards such as hugs, compliments or food, has proven more effective.
“Positive reinforcement takes a little bit longer sometimes, but the long-term effects are much stronger,” she said. “There is no excuse to hurt a child, especially a handicapped child.”
During morning recess at the institute, the children play in a walled-in yard. Several throw a rubber ball. Curtis sits beneath the stairway, giggling. Toby, Weber’s 19-year-old son, walks distractedly, bouncing off the walls. Kenn, who jabbers incessantly, plays on a slide.
Jack begins to jerk his hands, a tip-off to the staff that he may lapse into a slapping fit. Calvert McClurkin, a tall, well-built supervisor, moves quickly and grabs the boy’s hands. He makes Jack count to 10, a trick to help the boy calm down. It works. Jack plays peacefully for the rest of recess.
Later, back in class, Jeff slaps McClurkin.
“No hitting,” McClurkin tells him.
“I’m a bad boy,” Jeff says.
“You’re not a bad boy,” McClurkin retorts. “No hitting.”
The two hug.
“I have a love for the handicapped or the underdog,” McClurkin said later. “I believe in what I’m doing. At first, I felt very concerned about the aversive methods. I even went to David (Bristow) and said, ‘I have some problems with this.’ But then I saw that it does work.”
The videotape that plays in Weber’s office is horrifying. Weber’s voice can be heard at the start of the tape, explaining that the following scenes show students when they were admitted to the home.
Jeff appears on the screen. He is pummeling a staff member. In a rage, he pounds on tables, tears pictures from the walls, knocks over a lamp. He picks up a chair and hurls it over his head. The living room at the institute is left in shambles. Jeff laughs and screams.
Cut Ears With Scissors
Mark, another current resident at the home, also throws a tantrum. His parents are interviewed and say their son continually throws himself through windows. There is a close-up of Mark’s ears; the lobes are jagged and mostly missing. The narrator explains that Mark cut his ears with scissors while he was institutionalized at a state hospital. Mark is asked why he cut his ear lobes off.
“I don’t know why,” he says.
In class on this day, some three years later, both boys are calm and fairly well behaved. Weber shows the videotapes proudly, as proof that the institute’s program works.
The state has alleged that at least some of the school’s videotaped scenes--it makes a tape of every student--were staged. The charge is in an accusation of license violations filed with the state Office of Administrative Hearings and served on the Behavior Research Institute on Feb. 2, 1982.
“On occasions . . . respondent would prompt residents to become aggressive for the purpose of showing how bad the child was before treatment at BRI,” the document said.
“For example, in or about December 1980, Danny A. was prompted to grab an employee’s hair so it could be filmed,” the 61-page document reads. “Food was scattered around the room by respondent’s (BRI’s) employees and the scene was filmed to make it appear that Danny had thrown the food.”
Two past employees made these allegations to state investigators, Jacobson said. She declined to give their names. The witnesses never testified because the day before a scheduled hearing on the accusation, the institute and state reached their settlement.
“They were never staged,” Weber argued vehemently. “I took those films. They show what kind of work we’ve done here, the results we’ve achieved.”
Jeff Lazarus has been in the home 3 1/2 years. “Jeffrey has progressed tremendously,” said Judy Lazarus, mother of the sometimes-violent Jeff. “He’s very happy there and we’re happy to have him there.
“I get upset when people argue about aversives,” Lazarus said. “I think the people who criticize the home do not know what they are talking about and have never been there.”
Weber pounded a fist on her desk.
“I don’t know how you were brought up. When I was a little girl, if I did something good I got to go to the movies,” she said. “If I was bad, I had to go to my room. That is aversive therapy. That is behavior modification.
“The accusations will live with us forever,” she said. “This has been going on for 10 years. We were brought before a coroner’s inquest and cleared, but we’re still living in hell over that. We haven’t done anything wrong.”