Why Won’t the FDA Ban Devices Used to Shock Autistic Children?

Imagine a child fitted with a device that they can’t remove — one that delivers electronic shocks under the control of a teacher or aide. The shocks are sometimes so sustained and painful that they cause burns. The child never knows when to expect a shock, only that they’re linked with failing to obey orders or engaging in behavior that an adult doesn’t like.

If shocking children to force them to comply with your orders sounds like something out of a 19th century nightmare, think again.

At the Judge Rotenberg Center in Canton, Massachusetts, autistic students are regularly shocked for flapping their hands, not following commands, vocalizing, screaming in pain or cowering in fear because they’re being shocked. The school considers it “therapy,” claiming this approach is unique — it’s the only facility in the United States that performs this “treatment” for “emotionally disturbed students.”

Parents call it a lifesaver, claiming that the tactics at the JRC are necessary for their children. But disability rights activists are outraged. The United Nations describes it as torture. The ACLU maintains that it’s against the law.

And this horrifying practice could stop tomorrow if FDA Commissioner Scott Gottlieb signed a ban on the shock devices that was drafted back in 2016. Care2 activists are asking him to do just that.

Originally known as the Behavior Research Institute, the JRC is actually named for the judge who kept it open despite legal challenges surrounding its controversial “therapies” in the 1980s. The facility was founded in 1971 by Dr. Matthew Israel, who touted “treatment” for residents rooted in a theory called Applied Behavior Analysis — a controversial approach to autism criticized by some autistics for pathologizing autism and suggesting that expressions of autistic identity and existence are negative. Practices like flapping hands — a form of self-stimulation or stimming — are just a part of human diversity, they argue, not cause for medical intervention.

One of the ABA-informed approaches used at the school is aversive therapy, in which teachers and aides attempt to extinguish an undesired behavior by associating it with a negative stimulus. At the JRC, as elsewhere, aversives can include hitting or pinching, forcing people to sniff ammonia or placing white noise helmets over people’s heads.

The JRC includes another aversive technique, developed by Israel: The Graduated Electronic Decelerator, or GED, which delivers superficial shocks to the skin. No evidence supports the use of this device, but the JRC insists that this is what makes their approach unique.

Use of the GED has been repeatedly challenged in court. Relatively few JRC students are fitted with GEDs today, and all of them are by court order. In fact, the school argues before the court that the device is necessary, and the judge must sign off on it. Parents and the school claim it’s a method of last resort, though autistic advocates – including JRC survivors – dispute this assertion, maintaining that the use of shock is widespread and systemic.

Parents also say that the JRC is the “only choice” for their children, another assertion disability rights advocates contest. They argue that lack of supports and services is pushing parents and the foster system to place children in facilities like the JRC. Adequate support for home and community-based services can and does keep autistic people — including those who have difficulty verbalizing or struggle with issues like sensory overload and self harm — safe and happy in their communities.

Leaving kids in the JRC, these advocates say, amounts to a lifetime of trauma.

Despite the work of disability rights groups, including autistic self-advocates, the JRC has been allowed to persist in using GEDs — and the institute just won another battle; a judge ruled that shocking students is part of the “accepted standard of care,” despite the fact that it is used nowhere else in the United States — and opposed by both disabled people and experts. This ruling overturned the state’s 2013 move to halt the use of GEDs. Parents celebrated the decision, casting the school as the victim of bullying disability advocates and crooked state officials.

A whole lot of things about the JRC are rotten. But the use of GEDs is chief among them: No person, anywhere, should be subjected to the threat of electric shock as punishment. Period.

Disability rights groups like the Autistic Self Advocacy Network, The Arc and ADAPT targeted the FDA earlier this year with pleas to #StopTheShock, and it’s time for the commissioner to do the right thing and finalize the GED regulations. If he won’t, his boss Alex Azar needs to tell him to get it done. And if neither will, Congress needs to step up with national legislation to ban the use of shock as an aversive in autism “treatment.”

Take Action!

Join Care2 activists telling Commissioner Scott Gottlieb to get on the right side of history and stop the shock.

Creating a Care2 petition is easy. If you have an issue you care deeply about, why not start your own petition? Here are some guidelines to help you get started and soon the Care2 community will be signing up to support you.

 

Photo credit: Julie Jordan Scott/Flickr

46 comments

Kathy G
Kathy G2 days ago

Thank you

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Janis K
Janis K6 days ago

Signed

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Sherri S
Sherri S6 days ago

This is abuse and needs to be stopped immediately!

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Ruth R
Ruth R6 days ago

Thank you for the information. " You signed on July 12, 2018
Share with friends.
Get More Signatures!
17,664 SUPPORTERS 18,000 GOAL "

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Celine Russo
Celine Russo6 days ago

"Parents celebrated the decision, casting the school as the victim of bullying disability advocates and crooked state officials." Are you serious? How are these people even parents in the first place??? How about they live in the same conditions as their kids for a while and THEN they get their say.

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Winn A
Winn A6 days ago

Noted

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Winn A
Winn A6 days ago

:-(

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Chad Anderson
Chad Anderson6 days ago

Awful.

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Dr. Jan H
Dr. Jan Hill6 days ago

wow -

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Sue L
Sue L6 days ago

Using electric shock on children is barbaric! No person, anywhere, should be subjected to the threat of electric shock as punishment. Period.

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