Michael Shields, 51, sits quietly eating lunch with his parents, James, 83, and Phyllis, 85, who have come for their monthly visit. Michael has been a resident at the Judge Rotenberg Educational Center, a school for mentally disabled and autistic children and adults in a quiet Boston suburb, for 25 years. As he shoves potato chips into his mouth and guzzles root beer, a staff member stands solemnly behind him with a box the size of a deck of cards that allows him to send as many as 45.5 milliamps of electricity remotely into Michael’s body through bands that are strapped to Michael’s wrist and leg.
The box and the bands are called graduated electronic decelerator, or GED. When any of the 46 residents at JRC outfitted with the device does something wrong, like attack another person or himself, a staff member pushes a button on the remote control to deliver a two-second shock designed to be painful enough that the recipient will think twice about doing it again. There are also preemptive shocks for something as seemingly benign as standing up from a desk without permission or raising one’s arms, which center officials say can be a prelude to worse behavior.
JRC is the only place in the country that uses painful electric shocks to control violently aggressive and self-injurious behavior. The treatment is used on 1 in 5 of its residents, who live in group homes scattered near the center in Canton, Mass., and attend school or workshops there. To outsiders, it sounds brutal and inhumane. It’s aversive therapy of the most extreme kind, which the United Nations’ special rapporteur on torture and the U.S. Department of Justice have condemned. Scrutiny of the practice has come to a head this year, after the U.S. Food and Drug Administration said it was looking to ban the GED.
The threat of a ban, which has the support of civil libertarians and advocates for the autistic, has sent supporters of the treatment, including desperate parents, scrambling to stop it. For them, GED has been life-changing. Before Michael arrived at JRC, he had been through at least seven programs. “In a way, they all failed,” says James Shields. “He used to be shackled and wear a hockey mask 24 hours a day. Now that’s eased up since he’s been here.”
“Michael, do you like it here?” I ask him. “I like it here,” he says, although it’s not clear whether he’s just parroting the question.
Stories like these give hope to other parents, like Sarah Everett of Charlottesville. She says she lived a nightmare existence with her son Ashi until he enrolled at JRC four years ago. “JRC saved our marriage and saved our lives,” says Everett, 52. “When you have a son and you say, ‘Why don’t you get your sweater?’ and he attacks you and bites,” she says, “you’re living on edge and in constant fear.” Once her son, now 21, ripped out most of her hair.
Today, he is happy, Everett says, and has been weaned off his psychotropic medication without the GED. However, she wants him to have the option of using one. When he turns 22, he’ll go through the process to get on the GED. That involves a court review, parental approval, a peer-review committee, a human rights committee and an individualized service plan.
“As his mother and somebody who feels like I know him, I feel like two skin shocks and it would be a done deal for him,” she says. “I feel like they have done so much with him already that I feel like it would make it possible for him to have a very different type of relationship with us.”
During a recent weekday visit, the reception areas and classrooms are decorated in bright purple and turquoise, staff members smile at guests, and the children and adults — whose ages range from 8 to 55 — seem content and cheerful.
Executive director Glenda Crookes acts like a den mother. “I know each of these guys like they’re my own kids,” she says.
As we walk through the school campus, student after student approaches her, many of them saying, “Can I talk to you for a minute?” Often, they’re negotiating additional treats — a cookie, extra privileges.
We come to the “yellow brick road” area of the school, which is part of its system of positive reinforcements. It looks like a child’s fantasy playground. One room is packed with video-game machines and decorated with colored lights like a giant indoor carnival. A room for teens has an Xbox and an arcade-style basketball game. There’s a hair salon and an Internet cafe that looks like a tropical tiki bar, and a store where students who’ve earned enough rewards on their accounts can buy handbags, jewelry, clothes.
But spend a moment in a classroom for some of the more troubled students and you get a sense of what those incentives and punishments are meant to contain. One heavyset young woman starts screaming and biting the top of her hand, hard. As staff members struggle to control her movements, she bangs her head back against a mirrored wall so hard that the room shakes. Three or four other staff members rush into the room to help restrain her, fighting to get a helmet on her head and a padded vest on her body, and force her into a chair, which will face a corner.
This young woman, says Crookes, is not on a GED. She is prohibited from using one because she is from New York, which since 2009 has prevented school-aged students from receiving the shocks.
(Electric shocks to the skin are not the same as electroconvulsive therapy, ECT, which has also been mentioned as a possible treatment in autism. ECT passes electric currents through the brain using electrodes that are implanted or placed non-invasively on the scalp, or by using magnetic fields applied to the head.)
Center officials argue that shocks are a last resort, used in conjunction with many other forms of behavioral intervention. They provide data showing that for its patients on the GED, incidences of self-injurious behaviors and aggression drop dramatically with the device. They say that the self-injury is so extreme — biting off one’s own tongue, banging one’s head so hard the retinas detach, ripping out chunks of skin — that not to intervene this way is far worse. The GED also reduces the need for students to take psychotropic drugs, which cause lethargy and obesity.
Few can dispute that the electric shocks — and the threat of electric shocks — work, if “work” translates to an end to the behavior. The question for many, though, is at what price?
Opponents of the center argue that even if the electric shocks stop bad behavior, the behavior resumes as soon as the devices are removed. They also instill fear in students who watch their classmates get shocked. Some have even reported symptoms of post-traumatic stress disorder.
Then there is the potential for abuse, concerns about which have been raised by a former employee and two serious incidents, including one that led to the founder’s departure.
Greg Miller, who taught at JRC for three years, charges that the school shocked vulnerable students who had “tremendous anxieties” and would react to seeing their fellow students shocked and then have to be shocked themselves.
“There was constant fear,” he says. “You cannot get away from electric shocks, and you don’t know when you’re going to be shocked.”
JRC officials say that Miller never voiced complaints when he worked there and that a lot has changed since then. “He hasn’t set foot on JRC property in 14 years,” says Crookes. “He doesn’t know what’s going on here.”
Yet Miller’s concerns seemed to be born out when in 2012 a video from the 2002 case of Andre McCollins came to light. McCollins, at the time an autistic 18-year-old from New York, was strapped to a board facedown and subjected to 31 of the highest-level shocks over seven hours. Footage of that incident was broadcast after the judge in mother Cheryl McCollins’s lawsuit against the center allowed a news station to record in the courtroom.
It’s disturbing to watch McCollins screaming “No!” over and over, jerking in pain as the shocks hit his body. Cheryl McCollins, who reached a settlement with JRC for an undisclosed amount, says her son was abruptly taken off his psychotropic medications and was “in withdrawal” when he was shocked.
“They almost killed him,” she says by phone from her home in Brooklyn.
Crookes says the McCollins case is “not representative of what really happens at the school,” adding that JRC officials “did a careful look at some of the procedures that were very controversial and we made a choice to stop.”
Today, she says, JRC would suspend the young man’s skin shocks earlier, as well as look more closely at what caused his “behavioral outbursts.”
A year before that video surfaced, JRC founder Matthew Israel left the school over a 2007 incident, in which a prank call to one of the residential homes for students resulted in two students being shocked dozens of times while in bed — for no reason at all. Israel’s departure was part of a deal to avoid criminal charges after he was accused of destroying evidence.
FDA officials would not say whether the McCollins video and the 2007 incident prompted them to act, but in 2012 they sent JRC a warning letter saying the center had modified the GED to the point where it no longer had FDA approval. One updated version, called GED4, purports to deliver three times the power of the original.
Then in April, the agency proposed banning the devices altogether because “they present an unreasonable and substantial risk of illness or injury” that cannot be corrected or eliminated through labeling. In a statement, the FDA said that “state-of-the-art behavioral treatments, such as positive behavioral support, and medications can enable health care providers to find alternative approaches for curbing self-injurious or aggressive behaviors in their patients.”
The proposal generated 1,488 public comments, many of them calling the device unethical and immoral and a way to further marginalize a disabled population.
Using electric shocks is “incredibly barbaric treatment” that “exemplifies how much we treat people with disabilities differently,” says Susan Mizner, disability counsel with the American Civil Liberties Union. “There are few loving families who would consider this if they weren’t desperate. What we as a society have to figure out is why they haven’t been given other options.”
The GED grew out of a treatment process known as applied behavior analysis that sees a series of positive and negative reinforcements as the best way to change the behavior of autistic people — the head-banging, biting, hair-pulling and other forms of self-injury.
No one clearly understands why autistic people do this, but some think it’s a form of self-stimulation to manage anxiety and the frustration of being unable to communicate well.
Israel, who had trained under behaviorist B.F. Skinner, founded the center in 1971 in Rhode Island. Initially called the Behavior Research Institute, it used punishments such as spanking, pinching and spraying students with water.
In 1996, Israel moved the facility to Massachusetts, having renamed it the Judge Rotenberg Center after the judge who in the 1980s allowed it to continue aversive therapy. In 1988, JRC started using electric shocks. FDA had approved a form of aversive shock treatment in 1979, and the original GED fell under that classification.
A Rotenberg Center board member says he has used electric shock on himself. Richard Malott, a psychologist at Western Michigan University, used them to eliminate his habit of being unpleasant. “Every time I was sarcastic and hypercritical, if I detected it,” he says, “I would give myself a little ‘ouch, damn it, I hurt’ shock. Now I’m just so sweet and lovable,” he says, completely seriously.
Amazon.com even sells the Pavlok, a $199 device that looks like a Fitbit. “Download the app, and choose the habit you want to break,” the product description says, using “innovative ‘zaptic’ hardware.” Suggestions include zapping yourself with a mild shock if your inbox reaches 50 unread emails or you take too long to get out of bed.
To many, though, aversion therapy is as antiquated as “conversion” therapy, which was once used to convince gay men and women that they should not be sexually attracted to their own sex. In some cases, gay men were shown images of a naked man and then subjected to shocks to “cure” them of homosexuality.
Brian Iwata, a professor of psychology and psychiatry at the University of Florida who developed an earlier version of the GED, called the self-injurious behavior inhibiting system, or SIBIS, says it’s time to phase it out.
The SIBIS is no longer manufactured, Iwata says: “We found other ways to deal with the problem.”
Iwata says he’s treated hundreds of self-injurious individuals at the Kennedy Krieger Institute at Johns Hopkins Children’s Center and the University of Florida, including “the most difficult cases there were to see.” And he’s had success with milder forms of punishment, from timeouts to restraints, as well as rewards.
“It might take longer,” he says. “If we shocked everyone who came in the door, we could probably do things quickly.” But “most professionals in the field do not regard shock as an acceptable form of treatment for problem behavior.”
FDA officials won’t say when they will have a decision on the ban. JRC will likely continue to operate even if it goes through, says Crookes. But the parents who see the device as the reason their children are alive today say they will be left searching for new solutions. Having exhausted other avenues, many doubt they exist.
Massachusetts resident Lauren Emmick says she understands why outsiders might think the practice is bizarre. “If this hadn’t been my journey, I would think people were crazy. I get it,” says Emmick, 61.
She and her husband adopted their daughter Lian, 25, from China at 11 months. At 18 months, Emmick says, Lian was asked to leave day care because she was biting and scratching the other children. Doctors eventually diagnosed a schizophrenic affective disorder that caused aggression.
Everywhere she was sent, Lian ended up being restrained, including at home, Emmick says. When Lian first enrolled at JRC, Emmick resisted the idea of electric shocks.
“I thought she’d hate me for it,” she says. But in the first six months Lian was there, she was restrained 159 times, each for an average of 26 minutes — almost 69 hours total.
Today, Lian gets shocked less than once a month and is able to come home for overnight visits. Emmick comes to the center once a week to take her daughter to lunch.
If experts think there might be other options for her daughter, “I would like to hear what those are,” she says.
Correction: An earlier version of this story incorrectly stated that electroconvulsive therapy, or ECT, requires surgery. This version has been updated.
Debra Bruno is a writer in Washington. To comment on this story, email firstname.lastname@example.org or visit washingtonpost.com/magazine.
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