Autistic people don’t need shock aversives, we need vocal allies.
The government has one more chance to stop the torture this year — but they need pressuring, NOW.
*UPDATE* Hooray! The omnibus bill with a provision that gives the FDA the right to ban contingent electric shocks used for behavior modification was passed — but the fight’s not over. The new action item: Tweet @FDADeviceInfo and @US_FDA asking them to “pass the rule banning the electric skin shock device without delay, #StopTheShock” as soon as possible and as often as possible. Let’s put on the pressure!
There is a cruel practice happening to autistic and otherwise disabled humans in Massachusetts that the UN has very literally deemed torture, attempting to use painful electric shock devices in order to control their behavior. This week, Congress can stop this inhumane treatment by essentially re-including a ban in the end-of-year omnibus bill — but we need allies to put the pressure on them, now. There is no excuse for this kind of treatment, but theirs is claiming to prevent aggressive and/or self-injurious behavior, which has been found factually inaccurate and just makes no damn sense in the first place. Here’s the full scoop:
Being autistic means a lot of things. (A whole spectrum even.) But one thing that most autists have in common is that our differently-wired brains can get overwhelmed by stimuli typical brains handle just fine. It’s intensely unpleasant — for me, it’s akin to being strapped too-tightly to a rickety rollercoaster I really don’t want to be on while a bomb continuously explodes in my brain — so when that neurological overwhelm happens, there’s naturally a breaking point.
How that breaking point manifests will look different in different autists, but for some of us that overwhelm can lead to aggressive and/or self-injurious behavior. I am one.
After decades of dealing with sporadic but uncontrollable episodes, I’ve devised ways to help avoid them: now when I feel that warning of an oncoming meltdown (which, for me, used to usually end in self-harm) I know I need to get away from any surrounding people with as little interaction as possible, make the lighting soothing, take meds, put on lofi hip hop, get some therapy dog love, call my safe people, cry it out, and floor = good. If I still feel that overwhelming urge to tear at my skin, I try to discharge and interrupt the painfully overwhelming energy by scratching the side of my rough couch (it can take it), and/or screaming into pillows.
Why am I telling you all of this? Because something that sure fucking isn’t listed is someone remotely shocking my body without my consent. But that’s exactly what’s happening at the Judge Rotenberg Center (JRC) in Canton, Massachusetts, where they claim to prevent unwanted behaviors like the aforementioned self-harm in people with ‘developmental disabilities, emotional disorders, and autistic-like behaviors’ by essentially creating the harm themselves.
They use an extreme form of aversive therapy via a device called Graduated Electronic Decelerator (GED), which sends strong electric shocks throughout their bodies when they exhibit unwanted behavior — like autistic meltdowns, and the overwhelm behaviors that precede them. To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4, a type of Electric Stimulation Device (ESD) that isn’t approved by the FDA, shocks patients at 90 mA: nine times higher than a cattle prod (10 mA), and a whopping 22.5 times stronger than an electric fence (4 mA). In 2013, the UN Special Rapporteur on Torture condemned the practice, saying it “violates the UN Convention Against Torture and other international standards.”
It’s been very officially, internationally, declared torture — yet it still continues in the United States. The fight to get these kinds of devices banned in the US has been going on for decades (known online as #StopTheShock), but so far lawmakers haven’t made it happen.
In recent developments, the FDA tried to ban ESDs at large in 2020 stating, “FDA has determined that these devices present an unreasonable and substantial risk of illness or injury,” specifying, “ESDs present a number of psychological risks including depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness; and the devices present the physical risks of pain, skin burns, and tissue damage,” also stating, “ESDs have been associated with additional risks such as suicidality, chronic stress, acute stress disorder, neuropathy, withdrawal, nightmares, flashbacks of panic and rage, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and injuries from falling.” (So…decidedly not preventing harm.)
And guess what? Taxpayers are paying for all this increased danger and harm, and it’s not cheap; according to tax documents, in 2020 the Judge Rotenberg Center was paid $84,108,326 in grants and funding by our government. That’s money that’s not going towards actually figuring out how to better help autists successfully find our place in society, and we’re really struggling.
ASAN is asking autistic and disability allies to call your members of Congresss and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.
Again, the only defense the Judge Rotenberg Center (JRC) has for being the only place still using these inhumane devices is claiming the GED (a type of ESD) helps prevent aforedescribed self-injurious-behavior (SIB) as well as aggression (AG) and that they have the most difficult cases in that regard. However, the FDA’s 2020 inspection found otherwise, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.”
It makes no sense. They have no excuse.
You’d think that’d be it, medieval torture treatment over, but not in our legal system. Efforts by JRC lobbyists resulted in the ban getting struck down on technical grounds in July of 2021, with new disheartening developments this fall. On September 28th, The Autistic Self Advocacy Network (a valued resource in the autist community), reported, “The bipartisan effort to #StopTheShock was included in the House version of the FDASLA Act, and was added to the Senate bill following a committee hearing. But yesterday, Congressional leadership announced that the final bill would be a ‘clean’ bill that drops many important provisions, including the ban.”
Fortunately, there’s another chance, this month: the end-of-the-year omnibus bill. And you can help.
ASAN is asking autistic and disability allies to call your members of Congress and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.
Please call as soon as possible and once you’ve engaged, please encourage others to do so as well by sharing advocacy info using #StopTheShock. I’ve truly only touched on the harms caused by the Judge Rotenberg Center. It‘s terrifying that this is legal in my country and horrific that they continue to stay in business (let alone receive millions in government funding). They need to be completely shut down, it’s criminal that it hasn’t happened already, but the very least the government can do is re-include the ban on the use of electric shock for behavior modification in the omnibus bill.
Autistic people don’t need shock aversives, we need vocal allies. Thank you for supporting us by calling your congress members today to demand that these devices are banned.
