DAVID GREENE, HOST:
The Judge Rotenberg Educational Center in Massachusetts is the only known school in the country that uses electric shocks to control the behavior of its special needs students. The U.S. Food and Drug Administration announced plans to ban the controversial device that administers the skin shocks by the end of this year. But Jenifer McKim from the New England Center for Investigative Reporting says school officials won't give up the practice without a fight. And just to warn you, this story does contain audio that some listeners could find disturbing.
LUIGI: I didn't know. I look like...
JENIFER MCKIM, BYLINE: This is Luigi. The 47-year-old autistic man has lived for the past 20 years at the Judge Rotenberg Educational Center based in suburban Boston. He wears a backpack equipped with a battery and wires that are attached to his body and give him a two-second shock if he misbehaves. His sister Angela Disisto says the center and its shock treatments have been a lifesaver for her brother, who was once violent to himself and others.
ANGELA DISISTO: I see the results from 20 years ago to today. His behaviors have changed, calmed down. He's not even aggressive towards others or himself anymore.
MCKIM: The Rotenberg Center is a private, taxpayer-funded school catering to adult and minor students from across the country. Many struggle with profound disorders causing severe aggressive and self-injurious behavior like head-banging and biting. The so-called shock treatment has pitted family members who swear it has been the only way to control their loved ones against critics who call it torture.
(SOUNDBITE OF ARCHIVED RECORDING)
JENNIFER MSUMBA: They will give you a shock - a two-second shock somewhere on your body. And it really, really, really hurts. It's not just like a little static shock that you get when you touch a doorknob.
MCKIM: That's former resident Jennifer Msumba. The autistic woman declined to be interviewed for this story but described in an online video how she was afraid while wearing the backpack. Msumba filed a civil suit in 2014, alleging mistreatment during her seven-year stint at the center.
MSUMBA: I want everyone to know because I'm still suffering. And I know other people that were there that I am in contact with that are still suffering.
MCKIM: Rotenberg officials deny wrongdoing. They say instead, her treatment was a success. But the pending civil suit adds to a mounting number of legal and political challenges facing the center.
When the FDA announced plans to finalize a proposed ban on the shock device by the end of the year, FDA commissioner Scott Gottlieb said the apparatus presents an unreasonable and substantial risk to public health. Potential risks, federal records show, include burns to the skin, anxiety, fear and pain. Sam Crane is with the Autistic Self Advocacy Network. She's hopeful that the ban will finally stop the shocks.
SAM CRANE: There are also a lot of people in our community who know how long we've waited for this and are just trying to make sure it doesn't get delayed again.
MCKIM: Delays are possible. For one thing, FDA employees have been furloughed since late December. Glenda Crookes, the school's executive director, says the center and its loyal supporters will defend their right to use what she calls a lifesaving treatment.
GLENDA CROOKES: This is our larger workshop.
MCKIM: Crookes gave me a tour of the facility over the summer past students wearing headgear to protect from banging and staff members wearing padding to stave off biters. Currently, 48 adults at the school are court-approved to receive shocks. Crookes swears by the treatment.
CROOKES: I often say a two-second shock to the surface of the skin versus a lifetime of restraint, medication - it's not right. In such a short time after being court-approved for the use of the contingent skin shock, the change in their personalities - it's unreal.
MCKIM: The Rotenberg Center has prevailed against other efforts to stop it. In 2013, the state of Massachusetts filed a legal action after a video was released during a court hearing of a teenager receiving dozens of electric shocks over a period of hours. The sound from that video is hard to listen to.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PERSON: That hurts. That hurts. That hurts. That hurts. That hurts. That hurts. Ow, that hurts. OK, stop. Stop. Stop, for real.
MCKIM: A local judge ruled in the school's favor, finding the practices within an accepted standard of care. Now eyes are on the FDA. Luigi's sister, Angela Disisto, worries about what could happen if regulators do strip her brother of the backpack that she says keeps him in check. Until then, Luigi and others at this special needs school in Massachusetts are susceptible to jolts of electricity meant to inflict pain some call treatment and others, torture. For NPR News, I'm Jenifer McKim in Boston.
(SOUNDBITE OF MUSIC)
GREENE: And Jenifer's story came to us from our member station in Boston - WGBH.