Anti-shock treatment sit down outside FDA boss’s house

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Members of ADAPT, a disability rights collective, rolled through the streets of Washington, D.C., last weekend to make camp outside FDA Commissioner Scott Gottlieb’s house, where they remained as of Friday morning.

They say they’ll stay until he agrees to finalize a proposed rule that would ban the use of graduated electronic decelerator (GED) devices, which are used to deliver targeted electric shocks in an extreme form of Applied Behavior Analysis (ABA), a controversial form of therapy used with some autistic patients. But refraining from shocking autistic people in the name of therapy is, advocates claim, only the tip of the iceberg when it comes to changing the way we treat autistic people.

ADAPT activists say GEDs are “barbaric,” equating their use to torture. Gottlieb, they say, has refused to meet with them, though they and groups like the Autistic Self Advocacy Network submitted comments during the rulemaking process. “The FDA is working to finalize the proposed ban on electroshock devices. We cannot speculate on the timing for finalizing the rule,” FDA spokesperson Stephanie Caccomo told Rewire.News.

Just one facility in the United States, the Judge Rotenberg Center in Canton, Massachusetts, still uses such devices; it also manufactures them, and in 2011, the FDA warned the school about modifications that exceeded the cleared indications for use. The disability community wants to see them struck from the toolbox, and many autistic activists think terminating the use of GEDs isn’t enough. It’s time to shut down the facility altogether, advocates say, because difficult conditions for Judge Rotenberg Center residents don’t begin or end with electric shocks. Last year, for example, two staffers were charged with assault when they restrained, beat, and spat on a resident.

The group has been flooded with donations of food and supplies to support their effort while they hold their ground between visits from police and the Department of Homeland Security. The campers very consciously chose public ground, however, ensuring they wouldn’t run afoul of trespassing laws. While they haven’t seen Commissioner Gottlieb—and were told that he wasn’t home—they have encountered some neighbors in his wealthy neighborhood. “We had a lady screaming ‘you’re ruining our lives! Get out of here!’” But, says Penner, “we’ve also had the opposite,” with people expressing curiosity and interest in the sit-in.

Proponents say aversive therapy, like GED shocks, helps to extinguish “unwanted behaviors” by teaching people to associate them with pain or other unpleasant experiences. Patients who wear GEDs can be shocked at any time by someone who holds the controller, and shocks may be paired with tactics like breaking ammonia capsules under people’s noses, pinching, hitting the bottoms of the feet with spatulas, and other physical abuses, said Neumeier.

Many Judge Rotenberg Center residents are from out of state: According to Neumeier, nearly 150 residents—roughly two thirds of the school’s admissions—come from New York, most originating from New York City, and the population of the school is heavily Black and Latinx. The center, according to Neumeier, has “some pretty predatory recruiting tactics as far as low-income families of children with disabilities.

If pushing the FDA results in a move on the use of shock devices at the JRC, Neumeier says, “My big concern is that once the shock piece is eliminated, people will say ‘okay, we’ve solved this, let’s all go home now, yay.’ That won’t be enough.”