A coalition of doctors, lawmakers and advocates for people with autism has spent more than a decade trying to ban a medical device that is used to deliver painful electric jolts to people with severe neurodevelopmental disabilities.
Last year, a federal ban on the devices finally seemed imminent. But the upheaval sweeping the federal government during the Trump administration’s early months could further delay a resolution, allowing continued use of the controversial devices.
Wide-ranging cutbacks have been announced at federal health agencies, including the Food and Drug Administration, whose medical devices section had been working on the lengthy and convoluted process of implementing a ban.
Regulators determined that the jolts, delivered through electrodes strapped to a patient’s arms and legs, caused long-term harm and should no longer be used. Clinicians and relatives of residents at a treatment facility outside Boston defend the use of the devices, calling them a last resort for some of the facility’s most extreme cases.
The uncertainty over the devices’ fate has been compounded by President Trump’s chief health official, Robert F. Kennedy Jr., who has falsely linked autism with childhood vaccines. He recently called autism a preventable epidemic that destroys families and prevents people from living a full life, a characterization described as dehumanizing by many autistic people.
Rates of diagnosis for autism — a neurodevelopmental disorder that can cause difficulties with social interaction and communication — have increased nearly fivefold among children since 2000, when officials first began collecting such data. A recent report attributed some of the increase to increased screening, as well as a broader definition of the condition.
Because it encompasses a broad array of traits that can vary in how they affect a person’s life, autism is often described as occurring on a spectrum. Some autistic people live independently, with demanding jobs and active social lives. Others have trouble navigating some tasks and interactions, but can manage well with accommodations.
A subset of autistic people, however, need extensive day-to-day support, often beyond what their families can financially or emotionally provide. And in rare cases, the struggle to communicate or process sensory input can lead to extreme verbal and physical reactions, such as head banging or striking others.
In those cases, individuals may be sent to live in a residential treatment facility, like the Judge Rotenberg Educational Center in Canton, Mass. It is the only place in the country known to use electric shocks to manage residents and prevent potentially harmful outbursts.
The devices were developed in the 1980s by the center’s controversial founder, Matthew Israel. At the time, it was common for society to segregate people with neurodevelopmental disabilities and to use restraints and punishments.
Today, Dr. Israel’s shock devices are approved for use on 55 adults living at the center. Some have worn the equipment — which is often locked onto them in fanny packs — for decades. Some people started receiving shocks as children, though the device is now approved for use only on adults.
Critics, including Jan Nisbet, founding director of the University of New Hampshire’s Institute on Disability, point out that the shock treatment is considered a corrective measure, not a cure. In other words, people could be wearing the equipment for the rest of their lives to deter any harmful behaviors.
“If you want to decrease a behavior, you can punish them,” said Dr. Nisbet, who wrote a book on the Rotenberg Center. “But you’re going to have to keep punishing them.”
Most of the center’s residents are unable to consent to wearing the devices, leaving the decision up to their relatives and a probate judge. But some former residents have spoken out against the devices, including Jennifer Msumba, 48.
She testified to Massachusetts lawmakers in 2023 that the shock treatment left her with long-term trauma, including nightmares. “Every night, I wake up screaming,” she said.
The strongest jolts, which can be applied via remote control by clinicians and center employees, come at 41 milliamperes. A shock of that strength is extremely painful, causing a brief loss of muscle control. An electric current of 50 milliamperes is potentially fatal, depending on the amount of time a person is exposed to it.
It’s not clear what Mr. Kennedy thinks about the shock treatment, which is used both to stop violent behavior and to compel residents to follow instructions, and his office has not responded to requests for comment. But given his other views on autism, some advocates worry that an F.D.A. under his control will abandon efforts to implement a ban.
“No one should look at ending the torture of disabled people as a partisan issue,” said Zoe Gross, who is autistic and an activist with the Autistic Self Advocacy Network.
This is the second time that the F.D.A. has sought to ban the devices. A previous ban in 2020 was overturned by a federal court a year later, until Congress voted to clarify regulators’ authority. The debate has lingered despite near-blanket condemnation of the devices by civil rights groups, many medical research organizations and the United Nations.
Usage persists in part because the Rotenberg Center spends at least a million dollars a year on lobbying, according to tax records. But there are also ardent opponents of a ban in medical and legal circles, who say that the shock devices are the only option for some patients. Among the most vocal opponents of a ban are relatives of people receiving the treatment.
Tracy Green is one of them. She says the device gave her back her “beautiful son,” Anthony Green, who is 24. He began displaying violent behavior as a teenager, she said, sometimes forcing Ms. Green to barricade him, or herself, in a bathroom to avoid being bruised or bitten during his outbursts.
Mr. Green was admitted to Rotenberg after being kicked out of several treatment programs for injuring staff members, his mother said. Drugs either didn’t work or put him in a severe stupor. Now, his family can interact with him safely again, Ms. Green said. Last summer, he was able to visit a swimming pool for the first time in years.
“The cruel thing,” she said, “is not giving him the treatment.”
Christopher Hinton, 32, has been on the device since he was 8 years old. His mother, Cheryl Lloyd, said the shock treatment was the only way to stop Mr. Hinton, who is Black, from hurting himself or acting out in public, which she fears could get him killed by law enforcement. “If the device is removed from him, that’s the fear that I have,” she said.
It’s unclear what most residents wearing the devices think of the treatment. Many, including Mr. Green and Mr. Hinton, do not speak, or they communicate using only single words and short phrases. The center would not permit The Times to interview anyone wearing the shock devices during a visit late last year.
In 2022, however, investigators from the Association for Behavior Analysis International talked to four patients receiving shocks. Three said they didn’t want it, one of whom begged to be taken away, according to their report. Even though one patient wanted the treatment, the organization disavowed it, making the group one of the last of its kind to do so.
The outcry has come alongside a larger shift in society’s understanding of neurodevelopmental disabilities. There has been a growing awareness that efforts to “correct” behavior considered undesirable may traumatize people. A movement led by autistic adults and clinicians argues instead for a greater understanding from society and more support for speech therapy and other treatments.
Ms. Msumba, the former Rotenberg Center resident who wore the device, calls herself proof that alternatives can work. Her new treatment facility, she told lawmakers in 2023, has given her the time to understand and cope with her disorders, and has prescribed medications that had been denied to her at Rotenberg.
As a result, she said, “I have a real life now.”
Glenda Crookes, the Rotenberg Center’s chief executive, said that many things changed after Dr. Israel left in 2011 as part of a deal with state officials investigating an incident when the devices were misapplied.
Changes have included an expansion of other forms of treatment, Ms. Crookes said. But the facility remains committed to Dr. Israel’s values, she added, including the shock devices. “Our priority was, and always has been, to make sure that the treatment continues.”
Rachel Nostrant is a national and disability reporter and a member of the 2024-25 Times Fellowship class, a program for journalists early in their career.
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