Electric shock therapy under scrutiny
Ban threatened, but many believe aversive treatment is life-changing
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.”
Shocks a last resort
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 Glen- da 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.
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 schoolaged students from receiving the shocks.
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.
Searching for solutions
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, hairpulling 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.
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.