The FDA Hearing and The Judge Rotenberg Center: What You Should Know

[CN: abuse, ableism, torture]

Photo: Canton Community TV

Imagine being electro-shocked for getting out of your seat without asking permission. Imagine that the reason you were being shocked was simply because you may become aggressive, and all of it was legal. Imagine wearing the electrodes on your skin 24-7, knowing you could be shocked at any moment. Imagine witnessing your peers be shocked as well. Imagine that all of this is ignored because the public barely, if at all, acknowledges your existence.

This isn’t fiction, nor is it in some far away place or just a shameful part of history. This is happening in America, in 2014. The Judge Rotenberg Center (JRC) uses “aversives” as part of their treatment program. Aversives can vary, but some of the aversives used at JRC include electric shock (which is not ECT), mechanical restraints, and food deprivation.  Aversives are used for behaviors the staff deem “inappropriate” or “disruptive,” ranging from blowing bubbles with saliva to not maintaining a neat appearance. In addition to electro shocks, JRC practices isolation and physical restraints as per multiple reports (including former employees and members of the New York State Education Department review team). This is a difficult read (major TW for severe abuse, death), but necessary if you want to truly grasp the horror that goes on at the Judge Rotenberg Center.

In 2011, the Massachusetts Department of Developmental Services (DDS) ruled that licensed facilities can no longer use “behavioral interventions” such as “electric shock, long-term treatment, or aversives that post risk for psychological harm” on new admissions. Essentially the treatment program JRC has long proclaimed as a success is now deemed unfit. The problem is, this ruling is only for new admissions. Any students previously admitted and receiving aversives as part of their program, however harmful, are still being shocked. This is troubling. Most people are unaware that there is no federal law banning the use of aversives, even shock devices, even on children, even in schools, even on people with disabilities. State laws vary and it can be illegal to use such aversives in some, but no federal law yet exists to protect our citizens against a human rights violation. There is a lot of work to be done here.

The FDA advisory panel held a hearing on April 24th to consider a ban on the shock devices used at the Judge Rotenberg Center. The panel could decide to suggest a ban, either for all shock devices or only for the specific model(s) used at JRC. [UPDATE: The advisory panel recommended to ban the devices at JRC and will make recommendations to the FDA on the use of shocks for treatment. This is a vital step to ending the use of shock aversives.] Compelling testimony was given by advocates, victims, and former students. Some spoke in support of the “treatment,” many spoke to the physical and mental abuse that stems from electric shock. JRC representatives were also present to make their case as to why they should be allowed to continue using shock devices at their facility. They admitted that some students are shocked for just getting out of their seat. When questioned further, the reason given was because the assumption is that the student will be aggressive later. Yes, they actually conceded this at the hearing, they are shocking students because of something they might do.

The science behind aversives is controversial at best. There is such limited current research on its usage, I couldn’t find any to even refer to for this piece. I’ll continue looking and will update if I come across anything solid (though I suspect I won’t). Such “treatment” has long been dismissed as abusive, as well as a civil and human rights violation by most doctors, including experts in the field of psychology and neurology. Judge Rotenberg Center cites “countless studies” but what they fail to mention is most of those studies are outdated relics from the 1960-70’s, many of the newer studies are by the disgraced founder of JRC, Matthew Israel (I used to call him, The Teflon Don of Behaviorists). If you peruse the information, studies, and cases elsewhere, like the ones listed on Autistic Hoya or Psychology Today, it’s hard to take JRC’s claims seriously. I did find a National Academy of Sciences (2003) listing which offers suggestions and some results of animal testing with aversives. The thing I must note here, their recommendations, sound more humane than the treatment students are receiving at JRC:

Animal-use protocols for research involving behavioral stressors should include a thorough description of the potential animal-welfare issues associated with each stressor and a detailed plan for monitoring, record keeping, and determining when to end a test early to avoid unnecessary pain and/or distress.

At Thursday’s hearing, multiple panel members stated a clinical trial of contingent electric shock would be unethical. I still can’t wrap my head around this: it would be unethical to do a study on the very thing that you are contemplating whether to ban or not? Doesn’t that lack of ethics tell you all you need to know?

Very little exists to determine the effectiveness of shock aversives, particularly those used at the Judge Rotenberg Center. They created their own unique product (known as a Graduated Electronic Decelerator or GED) and have modified it as needed (meaning: made the electric shocks more powerful). JRC continually insists it is the only thing that works in some cases. Yet despite using electro shock aversives in some form since 1989, they apparently have no evidence or data to prove it’s effectiveness. That seems odd, no? Particularly, for a facility so keen on their shock devices, they don’t have some statistics to parade around, proving how great they work? Either their results aren’t that exceptional or they are really awful on record keeping. Or hey, maybe both? JRC did tout their data-tracking in this 2001 slideshow. Funny how all the years of precise record-keeping has led to zero physical numbers JRC can show the public. I’m not even sure how they manage to routinely label a treatment a success, when again at this hearing, they acknowledged that when the GEDs are removed and shocks no longer used, the behaviors being “treated” return. What they are doing is conditioning people to not do certain behaviors out of fear, not actually teaching them alternative behaviors or coping skills.

They state their employees are given three weeks of training on giving electric shocks. Three weeks? There are certain tasks or jobs that one could learn in three weeks, how to properly administer an electric shock is not one of them. Granted, I don’t believe anyone ever should use them to begin with. But we are talking about non-specialized employees, they are not certified, they are not physicians, administering these electric shocks. From all I’ve read, it appears there is little oversight on who gives and when the shocks are delivered. Based on their lack of data and record keeping, I’d say the shocks are given out whenever a certain staffer sees fit. One wonders if they are even required to fill out paperwork or maintain a log of when the shocks are administered. Also, if they do keep such records, how accurate are they? I’ll repeat, for a place that has been using shock aversives for at least 25 years, they’ve come to no scientific conclusions on its effectiveness?

When a doctor presents me with a treatment option, either for myself or my kids, I usually ask about its effectiveness, and its side effects too. I can’t figure out how JRC has gotten away with prescribing a treatment, without having any documentation of its efficacy and risks. What is certain, when parents are signing over their children to JRC and agreeing to electroshock aversives and other questionable treatments at JRC, they feel they are out of options. JRC is routinely described as a “last resort” for those who enter. Children and adults come from other centers and schools after being kicked out, deemed “untreatable,” or from juvenile detention centers and jail.

JRC has been known to do some enticing recruitment, they’ve offered a lot to families who feel their situation is dire. They show up at fundraising events for groups like Autism Speaks and present their colorful brochures to families who may simply not know any better. (By the way, JRC charges over $250,000 per student each year, much of which is paid for by tax dollars. Something to ponder…) For the individual and their family, I’m sure it feels like the end of the road, and they’re willing to try to get help, by whatever means necessary. I cannot speak for those parents or pretend to know what leads them to make such a decision, so I will leave my judgement toward them and focus it solely on JRC.

As citizens in a country like America, we assume certain things. Most of us assume that doctors are good and that laws will protect us from evil. Certainly, especially us parents, expect that the schools we send our children to will keep them safe. If a doctor or school program is saying a certain treatment will help our child, that must mean it’s tested and effective. I mean, we have the government and people looking out for us, right? They couldn’t say something will help us or our children without it being true, not in America, right? I mean, this is a country where Kinder Surprise is banned (by, you guessed it, the FDA), surely they wouldn’t let something awful happen to my kid? Those questions seem appropriate, and we’d like to think that in America, we would be safe from abuse, particularly when in school or at a hospital. This unfortunately is not true. From the United Nations’ Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, by Juan E. Méndez (pages 83-84):

Therefore and in the absence of evidence to the contrary, the Special Rapporteur determines that the rights of the students of the JRC subjected to Level III Aversive

Interventions by means of electric shock and physical means of restraints have been violated under the UN Convention against Torture and other international standards. The Special Rapporteur calls on the Government to ensure a prompt and impartial investigation into these continued practices. He calls on the Government to provide information on the Department of Justice’s (DOJ) investigation into possible violations of civil rights laws and to take measures to prohibit the use of Level III Aversive Interventions for all students on a national level, including those students who had an existing court-approved treatment plan as of 1 September 2011 in Massachusetts.

If the details provided thus far, or any of the information in the links included in this piece, or if the fact the UN has deemed it torture still makes you unsure about this “treatment,” perhaps hearing from victims will end any debate you may be having about whether shock aversives should be banned or not.

From a wbur article in 2011:

Cook said she was not given a choice on whether to attend the school — it was either there or jail. Now studying art, she said she lived in a state of fear for the three years she attended JRC — that’s because she said the shocks were used randomly.

“The shocks were used most of the time on things that didn’t make sense, especially for the kids on the lower autistic spectrum, the kids that couldn’t speak up for themselves,” she said. “In the case of the higher functioning students, a lot of the times they would get shocks for swearing or just saying ‘no,’ it wasn’t just for hurting people, it was for not doing things people wanted you to do.”

Another survivor’s account of the Judge Rotenberg Center and their use of shock. I have to warn you again on this one, it is a chilling account of abuse.

I’m a curious person. I’m also a writer. Those two things mean I spend a lot of my time researching. I’ve been like this as long as I can remember. I’ve been fascinated with all sorts of things, including serial killers. When I’m in research mode, I usually check my emotions at the door and let my curiosity take over. I can read about things that may gross other people out, basically. WIth JRC, it’s not possible for me to not be affected by what I see and read. I’ve cried and I’ve become sick to my stomach on multiple occasions when researching about the JRC. And I’ve been reading stories on them for about 7 years. It doesn’t get any easier. I honestly cannot believe I’m still reading and writing about them. How many more people must be harmed before they are shut down?

What was most disturbing, aside from the subject at hand (are we really debating torture?), were some of the questions brought up during this hearing. The panel and others considered whether autistic people feel pain, if pain equates to harm, and if individuals with disabilities suffer any harm from being shocked (i.e. intellectual effect, PTSD, etc.). I said several times it seemed like this panel forgot they were speaking about human beings. This is common though, and the reason why JRC has been able to function for this long. People with disabilities are seen as “others.” The public has difficulty finding empathy (oh the irony!) for groups that are classified as such, particularly those on the autism spectrum.

Many so-called awareness campaigns depict autism as a monster (no, really), parents say their child was “kidnapped” or it’s like they “have no soul.” The public is accustomed to seeing autistic people described as not quite human–even by their own parents and the very groups supposedly advocating for them. This is why I spend so much time talking about the Wrights and Jenny McCarthy, they aren’t just nuisances, they are doing real harm. They, along with plenty of other families and organizations, continue to instill fear in society about autism. For people who claim to care about those on the spectrum, and who want to “fight” for them, there sure was a lot of silence from these folks when it came to Thursday’s hearing. Shame on you, Bob and Suzanne Wright. Shame on you, Jenny McCarthy. Shame on you, Patrick Kennedy. I could keep going, but in the interest of time, I’ll leave it there. The audiences, financial access, and platforms these people have, and not a peep about the torture of autistic people at JRC.

The abuses occurring at JRC aren’t just issues to be looked at and fought by groups advocating for people with disabilities and autistic individuals. Everyone should know what the Judge Rotenberg Center is. If you care any bit about human rights, they should be on your radar. If you are concerned with the prison industrial complex, you should be writing letters. If you worry about poverty or health care, you should be making phone calls. If your focus is on child abuse, you should be telling everyone you know about the crimes occurring at JRC. This issue includes so many violations and injustices, it should not only be disability rights groups speaking out. The Judge Rotenberg Center has managed to remain open despite reports of deaths, abuses, and neglect for over 40 years. It’s going to take many of our voices to make real change here.

Special thanks to Ari Ne’eman and Lydia Brown, not only for their testimony, but also their outstanding live-tweeting of the #jrchearing.