How your autistic brothers and sisters are being treated: Judge Rotenberg Educational Center

Read the parts that are bolded.

Tom Taylor
28 Oct 2007

women.timesonline.co.uk/tol/life_and_style/women/families/article2732991.ece [link now only works if you can get past a log-in]

Shock tactics

Hundreds of children no other school wants— – from the autistic to the merely troubled –  attend a centre in America where electric shocks are administered for even the smallest misdemeanour. Forced to wear 10lb backpacks with electrodes attached to their skin, they never know when their teachers will deliver this `behaviour-modification’ therapy. Why hasn’t the school been closed down?

Rob Santana awoke terrified. He’d had that dream again, the one where silver wires ran under his shirt and into his pants, connecting to electrodes attached to his limbs and torso. Adults armed with surveillance cameras and remote-control activators watched his every move. One press of a button, and there was no telling where the shock would hit – his arm or leg or, worse, his stomach. All Rob knew was that the pain would be intense. Every time he woke from this dream, it took him a few moments to remember that he was in his own bed, that there weren’t electrodes locked to his skin, that he wasn’t about to be shocked. It was no mystery to him where this recurring nightmare came from – not A Clockwork Orange or 1984, but the years he spent confined in America’s most controversial “behaviour-modification” institution.

In 1999, when Rob was 13, his parents sent him to the Judge Rotenberg Educational Center, in Massachusetts, 20 miles outside Boston. The institution, which calls itself a “special-needs school”, takes in all kinds of troubled kids – autistic, mentally retarded, schizophrenic, bipolar, emotionally disturbed – and attempts to change their behaviour with a complex system of rewards and punishments, including painful electric shocks to the torso and limbs. Of the 230 residents, about half are wired to receive shocks. Eight states send students to this institution, with New York providing the most. The price tag for a year there is $220,000; states and school districts pick up the tab.

The Judge Rotenberg Educational Center is the only institution in the US that disciplines students by giving them electric shocks, a form of punishment not inflicted on serial killers or child molesters, or any of more than 2.2m inmates in US jails and prisons. Over its 36-year history, there have been numerous lawsuits and government investigations. Last year, New York-state investigators filed a blistering report that made the place sound like a high-school version of Abu Ghraib. Yet the programme continues to thrive – in large part because nobody, except desperate parents and a few legislators, seems to care about what happens to the hundreds of kids who pass through its gates.

In Rob Santana’s case, he freely admits he was an out-of-control kid with “serious behavioural problems”. At birth he was abandoned at the hospital, traces of cocaine, heroin and alcohol in his body. A middle-class couple adopted him when he was 11 months old, but his troubles continued. He started fires; he got kicked out of preschool for opening the back door of a moving school bus; he cut himself with a razor when he was six. His mother took him to specialists, who diagnosed him with a slew of psychiatric problems: ADHD, post-traumatic stress disorder, bipolar disorder, obsessive-compulsive disorder.

Rob remained at the Rotenberg Center for about 3 1/2 years. From the start, he cursed, hollered and fought with employees. Eventually the staff obtained permission from his mother and a court to use electric shock. Rob was forced to wear a backpack containing five 2lb battery-operated devices, each connected to an electrode attached to his skin. “I felt humiliated,” he says. “You have a bunch of wires coming out of your shirt and pants.”

Rob remained hooked up to the apparatus 24 hours a day. He wore it while jogging on the treadmill and playing basketball, though it wasn’t easy to sink a jump-shot with a 10lb backpack on. At night, he slept with the backpack next to him, under the gaze of a surveillance camera.

Employees shocked him for aggressive behaviour, he says, but also for minor misdeeds, like yelling or cursing. Each shock lasts two seconds. “It hurts like hell,” Rob says. (The school’s staff claims it is no more painful than a bee sting; when I tried the shock, it felt like a horde of wasps attacking me all at once. Two seconds never felt so long.)

On several occasions, Rob was tied face down to a four-point restraint board and shocked again and again by a person he could not see. The constant threat of being zapped did persuade him to act less aggressively, but at a high cost.

“I thought of killing myself a few times,” he says.

Rob’s mother, Jo-Anne deLeon, had sent him to the Rotenberg Center at the suggestion of his school district in New York, which, she says, told her that the programme had everything that Rob needed. She believed he would receive regular psychiatric counselling – though the school does not provide this. As the months passed, Rob’s mother became increasingly unhappy. “My whole dispute with them was, `When is he going to get psychiatric treatment?’ ” she says. “I think they had to get to the root of his problems – like why was he so angry?”

She didn’t think the shocks were helping, and in 2002 she sent a furious fax demanding that Rob’s electrodes be removed before she came up for parents’ day. She says she got a call the next day from the executive director, Matthew Israel, who told her: “You don’t want to stick with our treatment plan? Pick him up.” (Israel says he doesn’t remember this conversation, but adds:

“If a parent doesn’t want the use of the skin shock and wants psychiatric treatment, this isn’t the right programme for them.”)

After Rob left the centre he moved back in with his parents. At first glance, he seems like any other 21-year-old: baggy jeans, black T-shirt, powder-blue Nikes. But when asked to recount his years at the Rotenberg Center, he speaks for nearly two hours in astonishing detail, recalling names and specific events from seven or eight years earlier. When he describes his recurring nightmares, he rubs his forehead with his palms.

Despite spending more than three years at this behaviour-modification institution, Rob still has problems controlling his actions. In 2005 he was arrested for attempted assault and sent to jail. (This year he was arrested again, for drugs and assault.) Being locked up gave him plenty of time to reflect on his childhood, and he has gained a new perspective on the Rotenberg Center.

“It’s worse than jail,” he told me. “That place is the worst place on Earth.”

The story of the Rotenberg Center is in many ways a tale of 2 schools. Slightly more than half the residents are what the school calls “high functioning”: kids like Rob and Antwone, who have diagnoses like attention-deficit disorder (ADD), bipolar disorder, and post-traumatic stress disorder. The other group is even more troubled. Referred to as “low functioning”, it includes kids with severe autism and mental retardation: most cannot speak or have very limited verbal abilities. Some have behaviours so extreme they can be life-threatening – chomping on their hands, running into walls, nearly blinding themselves by banging their head on the floor again and again.

The Rotenberg Center has long been known as the school of last resort – a place that will take any kid, no matter how extreme his or her problems are. Residents range in age from as young as 9 or 10 up to their forties. For desperate parents, the institution can seem like a godsend. Just ask Louisa Goldberg, the mother of 25-year-old Andrew, who has severe mental retardation. Andrew’s last residential school kicked him out after he kept assaulting staff members; the Rotenberg Center was the only place willing to accept him. According to Louisa, Andrew’s quality of life has improved dramatically since 2000, when he was hooked up to the shock device known as the graduated electronic decelerator (GED).

Louisa and many other parents like the Rotenberg Center’s policy of not giving psychiatric drugs to students. At Andrew’s last school, Louisa says: “He had so many medicines in him he’d take a two-hour nap in the morning, he’d take a two-hour nap in the afternoon. They’d have him in bed at eight o’clock at night. He was sleeping his life away.” These days, Louisa says she is no longer afraid when her son comes home to visit. “[For him] to have an electrode on and to receive a GED is to me a much more favourable way of dealing with this,” she says. “He’s not sending people to the hospital [with injuries].”

Marguerite Famolare brought her son Michael to the Rotenberg Center 6 years ago, after he attacked her so aggressively she had to call the police and, in a separate incident, flipped over the kitchen table onto a tutor. Michael, now 19, suffers from mental retardation and severe autism. These days, when he comes home for a visit, Marguerite carries his shock activator in her purse. All she has to do, she says, is show it to him: “He’ll automatically comply to whatever my signal command may be, whether it is `Put on your seat belt’ or `Sit appropriately and eat your food.’ It’s made him a civilised human being.”

State officials have twice tried to shut down the Rotenberg Center – in the 80s and again in the 90s. Both times parents rallied to its defence, and both times it prevailed in court. The name of the centre ensures nobody forgets these victories; it was Judge Ernest Rotenberg who, in the mid-1980s, ruled that the institution could continue using “aversives” – painful punishments designed to change behaviour – so long as it obtained authorisation from a local court in each student’s case. These days, the court rarely, if ever, bars the Rotenberg Center from adding shock to a student’s treatment plan.

Whenever the Rotenberg Center faces criticism, it relies on the testimonials of parents like Louisa Goldberg and Marguerite Famolare to defend itself. Not surprisingly, the most vocal parent-supporters tend to be those with the sickest children, since they are the ones with the fewest options. But at the Rotenberg Center, the same methods of “behaviour modification” are applied to all kids, no matter what their behaviour problems. And so, while Rob would seem to have little in common with mentally retarded students like Michael and Andrew, they all shared a similar fate once their parents placed them under the care of the same psychologist: a radical behaviourist known as Dr Israel.

In 1950, Matt Israel was a freshman at Harvard looking to fill his science requirement. He knew little about B F Skinner when he signed up for his course, Human Behaviour. But he became fascinated with Skinner’s scientific approach to the study of behaviour, and he picked up Walden Two, Skinner’s controversial novel about an experimental community based on the principles of behaviourism. The book changed Israel’s life. “I decided my mission was to start a utopian community,” he says.

Israel got a PhD in psychology in 1960 from Harvard, and started two communal houses outside Boston. In one of these houses, Israel lived with a three-year-old named Andrea, the daughter of a roommate. He recalls she was out of control: “Wild and screaming… When company would come over, she would walk around with a toy broom and whack people over the head.” Through experiments with rats and pigeons, Skinner had demonstrated how animals learn from the consequences of their actions. With permission from Andrea’s mother, Israel decided to try out Skinner’s ideas. When Andrea was well behaved, Israel took her for walks. When she misbehaved, he snapped his finger against her cheek. Israel says his methods worked: “Instead of being an annoyance, she became a charming addition to the house.”

Israel’s success with Andrea convinced him to start a school. In 1971, he founded the Behavior Research Institute, an institution that would later become known as the Rotenberg Center. Israel took in the children nobody else wanted – severely autistic and mentally retarded kids who did dangerous things to themselves and others. To change their behaviour, he developed a large repertoire of punishments: spraying kids in the face with water, shoving ammonia under their noses, pinching the soles of their feet, smacking them with a spatula, forcing them to wear a “white-noise helmet” that assaulted them with static. After nearly 20 years, Israel began to move away from these methods and towards another one: electric shock. From his perspective, shock offered many advantages: “To give a spank, a muscle squeeze or a pinch, you had to control the student physically, and that could lead to a struggle. A lot of injuries were occurring.” By using electric shock, which requires just pushing a button, he could eliminate the need for employees to wrestle a kid to the ground.

Israel purchased a shock device then on the market known as Sibis – Self-Injurious Behavior Inhibiting System – that had been invented by the parents of an autistic girl. It delivered a mild, two-second shock. Between 1988 and 1990, Israel used Sibis on 29 students, including one of his most challenging, Brandon, then 12, who would bite off chunks of his tongue, regurgitate entire meals, and pound himself on the head. At times Brandon was required to keep his hands on a paddle; if he removed them, he’d get shocks, one per second. One infamous day, Brandon received more than 5000 shocks. “You have to realise,” Israel says, “I thought his life was in the balance. He was vomiting, losing weight. He was down to 52lb. I knew it was risky to use the shock in large numbers, but if I persevered that day, I thought maybe it would eventually work.”

This day was a turning point in the history of Israel’s operation: that’s when he decided to ratchet up the pain. The problem, he decided, was that the shock Sibis emitted was not strong enough. “So we had to redesign the device ourselves,” he says. He created his own, much more powerful shock device: the GED.

30 years earlier, O Ivar Lovaas, a psychology professor at the University of California at Los Angeles (UCLA), had pioneered the use of electric jolts to try to normalise the behaviour of autistic children. But eventually Lovaas abandoned these methods, telling a reporter in 1993 that shock was “only a temporary suppression” because patients become inured to the pain. “These people are so used to pain that they can adapt to almost any kind of aversive you give them,” he said. Israel encountered this same sort of adaptation in his students, but his solution was markedly different: he decided to increase the pain once again. Today, there are two shock devices in use at the Rotenberg Center: the GED and the GED-4. They both administer a two-second shock, but the GED-4 is nearly three times more powerful – and the pain it inflicts is much more severe.

The Rotenberg Center is a bit like a carnival fun house, I found, during a two-day visit last autumn. Giant silver stars dangle from the lobby ceiling; the walls and chairs in the front offices are turquoise, lime green and lavender. Israel, 74, still holds the title of executive director, and when he first greets me, he appears utterly unimposing: short and slender with soft hands, rounded shoulders, curly white hair, paisley tie. Then he sits down beside me and, unprompted, starts talking about shocking children. “The treatment is so powerful it’s hard not to use if you have seen how effective it is,” he says. “It’s brief. It’s painful. But there are no side effects. It’s two seconds of discomfort.” His tone is neither defensive nor apologetic: it’s calm. It’s the sort of demeanour a mother might find comforting if she were about to hand over her child.

Before we set off on our tour of the institution, there’s something Israel wants me to see: Before & After, a home-made movie featuring six of his most severe cases. He has been using some of the same grainy footage for more than two decades, showing it to parents of prospective students as well as reporters. It shows how in 1977, an 11-year-old girl, Caroline, arrives at the school strapped on a stretcher, her head encased in a helmet. Next, free from restraints, she tries to smash her helmeted head against the floor. In 1981 it shows Janine, also 11, who shrieks and slams her head against the ground, a table, the door. Bald spots testify to the severity of her troubles; she’s yanked out so much hair it’s half gone. Compared with these scenes, the “after” footage looks almost unbelievable: Janine splashes in a pool; Caroline grins as she sits in a chair at a beauty salon.

“These are children for whom positive-only procedures did not work, drugs did not work,” says Israel. “And if it wasn’t for this treatment, some of these people would not be alive.” The video is very persuasive: the girls’ self-abuse is so violent and so frightening it almost makes me want to grab a GED remote and push the button myself. Of course, this is precisely the point.

Considering how compelling the after-footage is, I am surprised to learn that 5 of the 6 children featured in it are still here. “This is Caroline,” one of my escorts says later as we walk down a corridor. Without an introduction, I would not have known. Caroline, 39, slumps forward in a wheelchair, her fists balled up, head covered by a red helmet. “Blow me a kiss, Caroline,” Israel says. She doesn’t respond.

A few minutes later, I meet 36-year-old Janine, who appears in much better shape. She’s not wearing a helmet and has a full head of black hair. She’s also got a backpack on her shoulders and canvas straps hanging from her legs, the telltale sign that electrodes are attached to both calves. For 16 years – nearly half her life – Janine has been hooked up to Israel’s shock device. A few years ago, when the shocks began to lose their effect, the staff switched the devices inside her backpack to the much more painful GED-4.

In 1994, Israel had just 64 students. Today he has 230. This astonishing rate of growth is largely the result of a dramatic change in the types of students he takes in. Until recently, nearly all were “low functioning” autistic and mentally retarded people. But today slightly more than 50% are “high functioning”, with diagnoses like ADD, ADHD, and bipolar disorder. New York supplies most of these students, many of whom grew up in the poorest parts of New York City. Yet despite this change in his population, Israel’s methods have remained essentially the same.

Students spend their days in classrooms, staring at a computer screen, their backs to the teacher. An elaborate system of rewards and punishments governs all interactions. Teachers and aides watch them all day, tallying their misbehaviours. Well-behaved kids can watch TV, go for a pizza, play basketball. Among the most prized rewards is a visit to the Big Reward Store, an arcade with pinball machines, video games, and flat-screen TVs hooked up to Xbox 360s. Each time a student curses or yells or disobeys the rules, a staffer marks it down on the student’s “recording sheet”. Staff then use the sheet to calculate what level of punishment is required – when to just say no and when to shock. They carry students’ shock activators at all times, hooked on to their belts. Each activator is contained in a plastic case, or “sled”, and each sled has a photo on it to ensure employees don’t zap the wrong kid.

Employees shock students for a wide range of behaviours, from violent actions to less serious offences, like getting out of their seats without permission. Every time they shock a child, they are encouraged to use the element of surprise. “Attempt to be as discreet as possible and hold the transmitter out of view of the student,” states the employee manual. This way, students cannot do anything to minimise the pain, like flipping over their electrodes or tensing their muscles. “We hear the sound of [a staffer] picking up a sled,” says Isabel Cedeno, a former student. “Then we see the person jump out of their seat.”

When they talk about why they use the shock device, Israel and his employees like to use the word “treatment”, but it might be more accurate to use words like “convenience” or “control”. “The GED – it’s two seconds and it’s done,” says Patricia Rivera, a psychologist who serves as assistant director of clinical services. “Then it’s right back to work.” By contrast, it can take eight or 10 employees half an hour or more to restrain a strong male student: to pin him to the floor, wait for him to stop struggling, then move his body onto a restraint board and tie down each limb.

Even with the GED, the stories both students and employees tell make the place sound at times like a war zone: a teenage boy sliced the gym teacher across the face with a CD; a girl stabbed a staffer in the stomach with a pencil. While staff have been contending with injuries since Israel opened his institution, the recent influx of high-functioning students, some with criminal backgrounds, has brought a new fear: that students will join forces and riot. Tellingly, among high-functioning kids most of the violence is directed at the staff, not each other.

Rotenberg staff place the more troubled (or troublesome) residents on one-to-one status, meaning that an aide monitors them everywhere they go. For extremely violent students, the ratio is two to one. Before I set off on my tour, a small crowd gathered: it seemed that almost the entire hierarchy of the Rotenberg Center was going to follow me. That’s when I realised that I’d been put on 5 to 1. As I roamed the school with my escorts, my every move monitored by surveillance cameras, I realised that it would be impossible to have a private talk with any student.

In the world of the Rotenberg Center, Katie Spartichino is a star. A former student, she left the institution in 2006 and now attends community college in Boston. Around noon, a staff member brings her back to the institution to talk to me. We sit at an outdoor table away from the surveillance cameras, but there’s no privacy: Israel and Karen LaChance, the assistant to the executive director for admissions, sit with us. Katie, 19, tells me she overdosed on pills at 9, spent her early adolescence in and out of psychiatric wards, was hooked up to the GED at 16, and stayed on the device for 2 years. “This is a great place,” she says. “It took me off all my medicine. I was close to 200lb and I’m 160 now.” But when she first had to wear the electrodes, she says: “I cried. I kind of felt like I was walking on eggshells; I had to watch everything I said. Sometimes a curse word would just come out of my mouth. So being on the GEDs and knowing that swearing was a targeted behaviour where I’d receive a [GED] application, it really got me to think twice before I said something rude.”

As Katie speaks, LaChance runs her fingers through Katie’s hair again and again. The gesture is so deliberate it draws my attention. I wonder if it’s just an expression of affection – or something more, like a reward.

“Do you swear any more?” I ask.

“Oh, God, all the time,” Katie says. “I’ve learnt to control it, but I’m not going to lie. When I’m on the phone, curse words come out.” The hair-stroking stops. LaChance turns to Katie. “I hope you’re not going to tell me you’re aggressive.”

“Oh, no, that’s gone,” Katie says. “No, no, no. The worst thing I do sometimes is me and my mom get into little arguments.”

For Israel, of course, one drawback of having so many high-functioning students is that he cannot control everything they say. One afternoon, when I walk into a classroom, a 15-year-old girl catches my eye, smiles, and holds up a sheet of paper with a message written in pink marker: “Help us.” She shuffles it into her stack of papers before anyone else sees. When I move closer, she tells me her name is Raquel, she is from the Bronx, and she wants to go home.

My escorts allow me to interview Raquel while 2 of them sit nearby. Raquel is not hooked up to the GED, but she has many complaints, including that she has just witnessed one of her housemates get shocked. “She was screaming,” Raquel says. “They told her to step up to be searched; she didn’t want to, so they gave her one.” After 20 minutes, my escorts cut us off.

Advertisements