The school that uses shock therapy on autistic students

‘My pain tolerance has gone to the point that I can’t really feel anything,’ said one former student

Autistic people should be leading public policy on autism — but they aren’t

Donald Trump usually isn’t associated with disability rights or the wellbeing of autistic people. Between his promotion of the theory that vaccines cause autism, his mocking of New York Times reporter Serge Kovaleski’s disability, his attempts to slash Obamacare and his mismanagement of the coronavirus pandemic, his actions actively killed disabled people or made them less safe.

However, in 2020, the Food and Drug Administration during his administration banned the use of "electrical stimulation devices" for self-injurious or aggressive behavior in children with autism, saying they “present an unreasonable and substantial risk of illness or injury to the public.”

The Judge Rotenberg Educational Center located in Canton, Massachusetts, which uses a device called a graduated electronic decelerator, is the only facility in the US that uses this form of shock therapy. And the center has faced media scrutiny in the past. In 2012, video footage showed Andre McCollins, a student at the center, tied by his arms and legs to a board as he was shocked more than 30 times over seven hours. The center’s founder Matthew Israel stepped down after prosecutors accused him of destroying evidence of two students being repeatedly shocked after a prank caller said they were misbehaving.

The practice is so heinous that Juan Méndez, the special rapporteur on torture for the United Nations, said in a 2013 report that the shocks violated the UN’s conventions against torture.

But last week, the US Court of Appeals for the DC Circuit said in a 2-1 opinion that “the FDA lacks the federal authority to ban a medical device for a particular use.” Afterward, the center said that they would continue to use the shocks “as a treatment of last resort.”

Former students of the center have described the horrors of shock therapy at Judge Rotenberg Educational Center. Jennifer Msumba, who stated that she was at the center from 2002 to 2009, said on TikTok that being in such a constant state of anxiety “takes such a toll on your body and your mind” and that it’s “not a little pinch.” Similarly, another student named Rico Torres told NBC he could be shocked for things as small as “inappropriate urination.”

“My pain tolerance has gone to the point that I can’t really feel anything. I get tattoos as a reminder of it,” Torres said at the time. “Sometimes all I crave is pain.”

Still, the parent association for the center praised the recent legal decision, which they said was preferable to their children being drugged or physically restrained. “There is no other treatment for our loved ones, and we will not stand by as they are mechanically or chemically restrained,” they said in a statement. The threat of physical restraint is one that has frequently been used by the JRC’s most eminent defenders.

Frequently, the press has framed parents who send their kids to a center like JRC as being loving advocates who know what’s best for their children. This is compounded by the fact that many autistic people subjected to shocks have intellectual disabilities, which means they are less likely to be taken seriously. As a result, the interests of parents are seen as synonymous with the needs of autistic and otherwise disabled people.

There is no doubt that parents can be good advocates for their kids. Throughout much of my travels while writing my book We’re Not Broken: Changing the Autism Conversation, I met parents who were relentless in their pursuit of adequate services and who wanted to ensure their children were living a happy life. My own mother was also an indefatigable advocate for me when autism was less understood than it is now.

But it is naive to assume that all parents know exactly what their disabled offspring want or need.

Oftentimes, parents can be pressured into accepting the necessity of “treatments” like shock therapy, as the FDA reported in 2016. But even if parents are fully aware of the conditions, they still don’t have to live with the consequences of having shocks regularly administered to them.

Indeed, when many parent advocates say that if not for shock therapy, their kids would be subjected to drugs or physical restraints due to certain behaviors, few people ask why autistic people engage in this behavior in the first place. Far too often, talk about safety is used as a means of depriving autistic people of their agency or their right to not be harmed by other people.

Unfortunately, what non-autistic people want for autistic people pervades every facet of policy, from research to treatment to employment opportunities. It’s becoming increasingly clear that that is not acceptable — and not helpful. Rather, the focus should be on what autistic people say they need, even if how they communicate is not considered conventional or easily understood.