Two years ago, the Food and Drug Administration set itself a deadline. The agency will ultimately decide whether to ban electroshock devices, which have been used for decades to manage self-harm in people with intellectual disabilities and autism.
The deadline set for the end of May has now passed without a verdict, and disability rights activists and those who have experienced such shocks fear there will be more to come. The practice, called a form of “torture” by U.N. officials and “punishment” by the American Academy of Pediatrics, has fallen largely out of favor in the United States in recent decades, but it still occurs in one facility, the Judge Rothenberg Center in Massachusetts.
Disability advocacy groups have been trying to have JRC shut down for decades, especially after a 2012 video of residents being subjected to seven hours of shock was shown in court. The facility provides schooling in addition to treatment, but is mostly considered a last resort, requiring access to behavioral therapy for children and adults who have not responded to other types of treatment.
Shock therapy treatments have faced legal challenges for years. The FDA began banning it in 2013 and attempted to outlaw it in 2020, but a federal appeals court judge overturned the FDA’s decision. A JRC spokesperson said the facility has 3,475 residents and 54 residents are receiving some form of shock therapy.
Aleida Martinez vividly remembers her first day at the facility in 2002. That’s when staff ripped the ring off her finger. It was an important gift from a close friend. The 14-year-old spent her childhood bouncing around in a children’s home being “beaten and abused” and wished JRC would be different. Three years at the facility dashed that hope. Martinez was routinely shocked by speaking out against abuse of all kinds, including when speaking her native Spanish.
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“When I get my nails done or get a tattoo, I still get PTSD from the sounds that sound similar to certain sounds from that (device),” said Martinez, now 38 and living in Alexandria, Virginia.
Robin Linscott first learned about the therapy in 2011 while working as a special education teacher in New York City. One of her students spent time at JRC and shared her shocking experience.
“It felt dystopian that something like this was actually happening in a place that claims its mission is to help people with disabilities,” said Linscott, director of education and family policy at The Arc, a disability nonprofit that serves people with intellectual and developmental disabilities.
It’s unclear whether the past experiences of Martinez and Linscott’s students accurately match the current state of the institution. JRC Executive Director Glenda Crooks said the center would need family and judge approval to use the device on residents. She acknowledged that the “two-second shock” was “painful” but valuable in stopping certain behaviors, and that the results were “amazing” and “miraculous.”
“(One) had been here for seven years. She had been detained the whole time. … Imagine being in the shoes of a mother who was too dangerous to hold her child for seven years. And she comes to me and says, ‘I want to try treatment. I’ll give you 30 days.'” Within 30 days, he was off the medication. He was not in custody. He was at his sister’s bat mitzvah,” Crooks recently said on a podcast.
Martinez disagrees with Crookes’ assertion that the device’s benefits outweigh its drawbacks.
“They say people’s behavior will change, because when you’re on the (gradual electronic decelerator) you’re in shock and it’s like walking on eggshells and living in fear, as if nothing has changed,” Martinez said.
It is unclear what decision the FDA will make on this issue, and a federal health spokesperson did not respond to a request for comment on the agency’s plans. A federal appeals court reversed the 2020 ban, saying the agency lacked proper authority to make that decision. Congress included a provision in the 2022 omnibus bill that would give the FDA the authority it previously lacked to enact bans. When the FDA released its first rule in 2024, the majority of comments supported reinstating the ban.
Linscott hopes the shock will end to protect people like her brother, who has autism and has been aggressive and self-harming at various times in his life.
“We came pretty close a number of times,” Linscott said. If the FDA didn’t ban it, “it would feel like salt in the wound.”
STAT’s coverage of disability issues is supported by grants from the Robert Wood Johnson Foundation and the Commonwealth Fund. our financial supporter It has no role in any of our journalism decisions.
