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.
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