By Adriana Gamondes
On Febrary 22th, 2013, Office of Council member Vincent Gentile issued a press release calling for the removal of all New York students of the Judge Rotenberg Center in Canton, Massachusetts.
Councilman Gentile is no doubt serious in his campaign to pull New York students and funds from the Judge Rotenberg Center and sincere in his outrage at the school’s aversive and dangerous practices. The following is not meant to express cynicism towards this particular effort and it would be a certain victory for human rights if this campaign succeeded where others have failed. Most have probably noticed by now that, despite repeat major media exposés, clusters of blog criticism, ineffectual clicktivism and even a request filed with the United Nations Special Rapporteur on Torture in 2010 to protest human rights violations, the Judge Rotenberg Center has weathered most storms.
But if the Rotenberg Center didn’t exist, what would the people and organizations instrumental to sustaining the epidemics of childhood developmental disorders and chronic disease moralize about in order to prove they don’t always defend institutional policies? What would those who profit by and suppress constructive solutions for these epidemics point to in order to comparatively diminish how their actions contribute to disaster and the mounting toll of failing health and mortality among American children?
As an estimated three or more individuals with special needs are killed every week in US schools and institutions due to abusive practices; as the news reports more and more children with autism arrested in schools , brutalized by police , denied organ transplants , found face down in ponds and subjected to a lottery for services ; and as disability services around the country are trimmed to the bone ; as the US drops to #49 on the world infant mortality index; as 1 in 8 children of Somali immigrants in Minnesota are diagnosed with autism and the national rate soars beyond the official 1 in 88 ; as toddlers are drugged with increasing frequency; as the vaccine schedule continues to expand and the drum beat of denial over a host of potential environmental causes and co-factors involved in the rise in disability in the US grows louder, in terms of the mainstream mismanagement of what may be one of the worst medical disasters in history, to be the “leper with the most fingers,” you might have to find another “leper” with stumps in place of arms.
That bar is kept low as long as the JRC exists. To be a champion of children’s rights and a hero for the disabled, all any mouthpiece has to do is criticize the Rotenberg Center. Meanwhile Matthew Israel, the center’s founder, smiles the wistful, knowing smile of the contracted fall-guy and extortionist. And the center—founded in 1971 and renamed for the judge who defended the institution against the first wave of attacks on it the year the autism epidemic was launched and the year Prozac was first marketed—has endured all the while.
The low-cost way to explain the mystery of the JRC’s endurance: whenever the next crusader in a long line of crusading bureaucrats attempts to shut down the “school of shock,” a handful of parents of the center’s students go up into arms and protest that the Rotenberg Center provided the only therapy that stopped their children from injuring themselves or others, from smearing feces on every surface or otherwise acting like crazed animals.
This explanation is favored by both those who defend the institution and those who want to be perceived as protesting it alike. But even those who genuinely protest the center’s practices are either blind to the machinery which has sustained the institution for so many decades or loathe to commit the politically suicidal act of addressing it. The latter are probably the most hypocritical if they grub for humanitarian “creds” while still performing the table-cloth trick of leaving in place the factors which feed the school. But even the sincere may eventually throw up their hands as they start stumbling over the skeletons pouring out of every dark “closet” that surrounds the issues of disability and institutional abuse in the US. At least in the past, official demands for long term research on outcomes for the JRC’s specific practices have tended to fade to whispers over and over again.
Sadly, the airing of the now infamous JRC torture video and the
perpetual wilting of each round of public outrage in the press might be used as
a kind of litmus test or even public inculcation exercise: if the public sees
the video and reads of the campaigns to close JRC and the center is not closed
forthwith this time, this can be bureaucratically interpreted as a sign the
public tacitly approves and will allow it.
But even if current campaigns finally succeed, the Rotenberg Center is a hydra: closing the center without investigating the real reasons it’s endured cuts off only one head. The same abusive practices will crop up, even if by stealth, in other institutions. Again, why?
Ask founder Matthew Israel, who penned the JRC’s public apologia in reply to the U.N. Special Rapporteur on Torture. The answer is there if one reads past the most frequently cited quote in the document: “Under state and federal law, non-disabled individuals have the right to choose aversive therapy to treat behavioral problems such as smoking and drinking. Preventing disabled persons from the opportunity to avail themselves of aversive therapy for their own behavior problems, would be an invidious discrimination against disabled persons.”
Instead, the central clue about the center’s endurance may be found within the title of Israel’s response— one that outraged mainstream disability advocacy groups never quote: “Behavior skin shock saves individuals with severe behavior disorders from a life of seclusion, restraint and/or warehousing and the ravages of psychotropic drugs.”
In his book, Nuclear Rites, Stanford anthropologist Hugh Gusterson documents his cultural study of atomic weapons scientists in light of epic disasters and nuclear proliferation in the 20th century and makes the point that, in order to fully understand destructive decision making in certain fields of science, it’s important to go beyond black and white/good and evil analyses of human motivation. Instead, Gusterson argues, it’s critical to inspect the rationalizations of the individuals making disastrous decisions and regard the problems they’re charged with solving.
The idea that skin shock “saves” individuals with self-destructive or violent behavior from a worse fate is obviously disputable. Dr. Jonathan Tarbox, Director of Research and Development at the Center for Autism and Related Disorders, argues for a different approach . But what’s not disputable is that the “salvation” argument is Israel’s and like-minded behaviorists’ rationalization and that the conditions of many children before they’re routed to JRC are often horrific. A “before and after” video put out by the Judge Rotenberg Center which attempts to demonstrate the benefits of the JRC program actually tells us very little of scientific or clinical value because there’s no data on what caused the “before” and therefore only skewed information on what produced the “after” effects for a series of self-injuring and violent students who are then shown to have—at least for the duration of these short clips—less agonized behavior.
The first question is what may have caused these severe disabilities in the first place? Genes or environment? Secondly, what environmental factors were these individuals exposed to over the course of their lifetimes? What if any drugs were they given and at what age? What are the known side effects of these drug cocktails? What medical investigations have been made (or neglected) which might explain sources of pain and that might in turn drive an individual to “distract” their nervous systems with self-induced pain? What might explain the seemingly effortless ability of some disabled children to “ruminate” (vomit) at will? Were any of these co-existing behaviors and symptoms caused or exacerbated by environmental factors or medications? Were consistent positive behavioral supports available to these children from the first signs of behavioral disturbances? Did parents have wraparound help at home in consistently applying positive behavioral supports? Were these children mismanaged or abused in school settings? Were they warehoused? And how much of the improvements shown in these video clips could simply be due to removing drugs with black box warnings for violence, suicide and known painful and maddening side effects like tardive dyskinesia, nervous system inflammation, akathisia or gastrointestinal damage?
The video clips do nothing to answer any of these questions, though the links provided in the “leper” scenario above can to a certain extent: Disability is rising in the US and therefore must have environmental components. The rise in disability must have some overlaps with the general worsening of children’s health in the US. Most disabled children do not receive consistent positive behavioral supports and families receive little if any help at home to implement them. The increasing number of reports of abuse of the disabled in public schools and private institutions is terrifying and individuals with cognitive disabilities are drugged at an alarming rate.
But again, even if the JRC’s clips say little about cause, they do say a great deal about the rationalizations of behavioral specialists who would subject disabled individuals to “aversive behavior modifications” which, under many international accords, would be regarded as torture. The clips also explain a great deal about the rationalizations of the judicial system in allowing the school to exist.
The Judge Rotenberg Center boasts that the school doesn’t employ prescription behavioral drugs. This is only one of many hints that the center is the “Last Chance Texaco” for a considerable number of children with a variety of behavioral disorders (increasingly autism) who are so over-medicated and chemically addled that no other institution will take them and even one more pill might kill them. As the rate of autism among JRC students has risen with the general rate in the U.S., this is of increasing statistical significance since autism is the most “medicated” condition (representing roughly 7% of a $40 billion dollar psychotropic drug market ), with a reported 56% drugging rate .
The survey, the first of its kind by the National Institute of Mental Health, found that 56 percent of autistic children, age 6 to 17, were on one or more medications used to treat disorders such as anxiety, depression, psychosis or hyperactivity. Also known as autism spectrum disorder, the condition affects about 1 in 88 children in the United States, according to the Centers for Disease Control and Prevention, and was considered a rare diagnosis before 1980.
The body of evidence linking various behavioral drugs to violent and self-destructive behavior among children in general is growing as well. And the degree to which institutional and social responses to this increase in disruptive and frightening behavior among today’s heavily medicated youth and especially heavily medicated disabled populations remain uninformed of the association may also be the degree to which those responses will be punitive, abusive and deadly. The rising use of abusive restraint and seclusion practices in typical education settings and the trauma and consequent worsening behavior they induce has a certain see-saw relationship to the increased use in drugs in this sense. But while Matthew Israel has openly criticized the use of psychopharmaceutical drugs, like Halliburton decrying, for example, the ravages of Katrina or the BP disaster , how sincere is any disaster capitalist in bemoaning the problems they profit from “solving”?
The fact that Dr. Israel may be quite frank about why the center exists for the most part doesn’t necessarily make him a sympathetic figure. It may simply be that the degree to which public health establishments engage in revolving door employment policies and receive various forms of funding from the very industries which may be largely responsible for both the galloping rates of disability and chronic disease in the US and for exploiting these health disasters may be the degree to which the judicial system and regulatory oversight refuse to knock on certain doors. And if pushed, Dr. Israel will easily open one of those doors, pick up a handful of bones and wave them around because, at least to date, this has shut down inquiries in a heartbeat.
To further illustrate the secret of JRC’s longevity, their website contains a Massachusetts Family Court “ amended behavior modification treatment plan ” documenting the proposed transfer of “XXXX,”a teenager with autism, from the New England Center for Children to the JRC.
XXXX appeared to have gone from public school “autism classrooms” to psychiatric institutionalization, had—as is typical— been drugged from a young age and suffered side effects from Ritalin, Clonidine, Haldol, Mellaril, Depakote, Dexadrine and Corgard before being transferred to the NECC at roughly age nine.
The New England Center for Children claims that it employs “positive behavioral strategies” and insists its practices constitute Applied Behavioral Analysis, though as many experienced autism parents know, the value of ABA largely hinges on the way it’s applied and by whom. Consistent application of positive behavioral supports within the practice of ABA have been shown—for those families who can even afford a therapy which is generally not covered by insurance or supplied with any consistency in schools —to ameliorate many of the most destructive behaviors associated with autism. But as a science, ABA is morally neutral and the ethics in applying it can vary. Unfortunately, much of what is called “ABA” is, according to one specialist who spoke off the record, “not ABA but mad science.” Interspersed among the “positive behavioral strategies” that NECC used on XXXX, for example, NECC staff employed up to ten “restraint holds” a day and placed XXXX in seclusion for 8 hour periods during the school day in a bare room. When XXXX’s behavior continued to worsen, the NECC placed the boy on additional drugs like Risperdal, Tegratol, Trazadone, and Benedryl.
The JRC’s website also includes several parent testimonies which tell virtually the same story—failed interventions leading to transfers to JRC— though references to prescription drug use aren’t included. In any event, when regimens of Skittles, allergenic diet, restraint and drugs at typical institutional schools that reportedly employ “positive strategies” for behavioral modification fail, the rejects are sometimes routed to the JRC.
Despite the documented success of the “autism diet” in improving behavior in many cases, the NECC of Southborough, Massachusetts, sponsored in part by Dunkin’ Donuts, has reportedly demanded that parents of prospective students agree not to employ special dietary restrictions (e.g., gluten-free/dairy-free/soy-free). Though it’s difficult to get direct confirmation of any such dietary contract, the school’s views on vaccination are clear even as questions regarding the link between vaccines, environmental toxins and autism remain unsettled . Regardless, NECC’s founder and executive director, Vincent Strully , has been very vocal in arguing the lack of association between autism and childhood immunizations, has never invited discussion of other potential environmental factors and offered the closing nay-say on the vaccine link in a 2007 news article on a recovered child.
More and more kids are recovering from autism, according Wendy Fournier, president of National Autism Association, a parent-run advocacy organization located in Missouri.
"Doctors are realizing it's medically based. If you treat them medically - treat them with what's going on in the body, they get better," she said. "The problem is the medical community looks at them like they have some incurable mental illness. Autism is thought of as a mysterious mental illness."
But Vincent Strully Jr., chief executive officer and founder of The New England Center for Children in Southborough, said he has not seen any credible evidence that there is a cure for autism.
"To my knowledge, I don't know of any qualified medical or psychological professional who said there is a cure," said Strully. "It's widely accepted there is no cure. While anything is possible, you have to see real evidence in public journals."
Money was spent to continue to look at vaccination even after the research was conclusive, to the point where The New England Journal of Medicine begged people to stop spending time on this, that I was clear that there was no relationship between the vaccine and the rates of autism.
Harry Tembenis, a parent in the above report, openly contradicted Strully’s “lack of association” claims and went on to be awarded compensation from “vaccine court” for the autism and seizure-related death of his son, Elias Tembenis
Strully also defended his behavioral treatment turf by disparaging non-psychopharmaceutical medical treatments for autism in a piece for Web MD:
"People are faced with a raft of alternative treatments that have no merit," Vincent Strully Jr., the NECC's founder and executive director, tells WebMD. He counts special diets, secretin treatment, and mercury detoxification among those.
And before the explosion of public protests over the use of “scream rooms” on disabled children and the GAO report of death and trauma to students placed in seclusion, NECC seemed proud of using seclusion in 2007:
When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.
If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student's best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.
NECC is hardly the only institution which may be “feeding” the JRC with treatment collateral, but there’s a certain emblematic resonance in the fact that, in 2007, the NECC signed an agreement with health authorities in Abu Dhabi, the capital of the United Arab Emirates, to start a program for autism following a steep hike in the region .
Since the UAE, with the support of the Bill and Melinda Gates Foundation , seems to be in the process of adopting something similar to the U.S. vaccine schedule and possibly the autism rate to go with it (not to mention the corresponding obfuscations: Abu Dhabi’s state-controlled media company coproduced Steven Soderbergh’s Contagion ), it’s only natural that they would start to adopt our approaches to managing the epidemic as well.
If the U.A.E. is bringing in a contradictory treatment regimen of rewards, restraint and drugs, they may also need an “Abu Dhabi JRC” to catch the runoff of failed cases. Matthew Israel could consult for the construction of a new “therapy” wing in one of the U.A.E.’s secret prisons which the U.S. government has admitted to using in cases of extraordinary rendition . The operations could be extremely cost effective if the U.A.E. continues the practice of stripping migrant workers of their passports to create indentured labor. And the public would be unlikely to complain about therapy gone awry on pain of being “disappeared” to the prisons’ less “therapeutic” wings.
One of the weirder features of the Judge Rotenberg Center “school of shock” is the 80’s-Vegas-style Wizard of Oz themed “rewards” wing —complete with animatronics characters from the film— proudly displayed in a photo tour on the JRC’s website.
The boiled-down moral of the Wizard of Oz—the story of how problems tend to repeat and expand from one realm to another until the sources of trouble are faced (and then either crushed or doused)— is that Dorothy never needed the Wizard to get home in the first place. But middlemen tend to carve out niches for themselves and Matthew Israel, who was forced to step down as the JRC’s director as a half-measure concession, has been the ultimate middleman behind the curtain and his “vision” for the institution lives on. Without the epidemic and without drugs with black box warnings for violence and self-harm to which more than half of children with autism and so many disabled are exposed—and without the massive increase in institutional abuse and dual trauma that has come in tow—the JRC might not have survived so many rounds of public outrage and judicial review.
The Wizard of Oz narrative contains all the major themes which could explain the JRC’s continuing existence: assault, sedation and, to stretch the shoe-zap analogy, shock.
Dorothy probably didn’t need the ruby slippers either—but Glenda needed a patsy. So the alternative message of Oz is that adults—even those posing as helpers— will exploit children and put them at risk for their own agendas. And that about sums up the Judge Rotenberg Center, which is seems to be perpetually the center of a “gale storm of controversy” which, to date, has never blown hard enough to flatten the school or douse the most “beautiful evil” of all: America’s corrupt and broken public health and institutional establishments.
Adriana Gamondes is Contributing Editor to Age of Autism.