Suppose you are a parent of a son or daughter with autism (ranging from mild to severe), mental retardation, a mental health disorder, or some form of emotional disturbance. That child has been displaying behavioral problems that are destructive, socially unacceptable, and beyond your control, like screaming wildly, repetitively banging his or her head against the wall, running into walls, biting his or her hands, or assaulting other people for some incomprehensible reason. Such destructive behavior had constantly landed him or her into trouble at school and in society. As a result, the child gets expelled from school, other children distance themselves from him or her, and your friends and associates have doubts that your son or daughter will be able to have a future let alone managing his or her life alone. You search high and low for a solution to your child's problem. You take your son or daughter to counseling and psychiatric sessions and were given prescription drugs in an effort to control his or her behavior. Yet the child appears to be doing worse than before due to side effects of the drugs. Then one day you learn of a school located in Canton, Massachusetts (a town located 20 miles outside of Boston) called the Judge Rotenberg Center (JRC). It is a special school for children and young adults with various disabilities and behavioral problems that specializes in a unique form of treatment that guarantees a better life (or so they say). You became interested, so you decided to visit the center for more information. On your tour, you learn more about what they call aversive treatment, which is behavior modification that uses electrical shocks and physical restraints to punish destructive behaviors and reward positive ones. You were also shown slide shows, consisting of 'before' and 'after' photos, that appear to demonstrate the effectiveness of the treatment in improving the lives of all problem children. Convinced and seeing no other alternative, you sign up your child for the program offered at the JRC. Six months pass and you hear reports from the center that your child is slowly but steadily improving. However, you also hear stories of children and young adults suffering from pain, humiliation, fear, and scars both physical and psychological as a result of the JRC's behavior modification program. You also get a call from your son or daughter a couple of times, hearing him or her sob as he or she talks about the pain and deep skin burns from the electric shocks, the countless hours of being held in restraints, how everything he or she does and says is being monitored, and the people who are doing it to him or her. Those few calls suggest that your son or daughter is being tortured. You decided to visit the child to find out what has been going on for the past six months. Would you continue to support the Judge Rotenberg Center after learning the stories you have been hearing turn out to be true?
For some families who see no other option for treating the most severe conditions of their children, lawyers representing the JRC, and others connected to it, the answer is yes. For the ever increasing opposition, the answer is no. As an autistic person striving for a productive independent life, I support the latter.
Ever since I first became aware of the center's existence a few years ago, I've written a few blog posts for The Voice of Heard on the JRC,
providing information on the JRC's practices and updates regarding where the issue was standing at the time of the original writings as well as
expressing my calls for the center to be closed permanently for their methods of behavior treatment that are tantamount to torture. Yet even after amassing a large amount of evidence of ethical violations, including security footage from the center itself that shows an autistic boy being restrained and shocked, and getting an overall rating of 1 based on 26 reviews on Google in the past few years, the Judge Rotenberg Center still remains open due to the influence of the center's lobbyists and the vocal support of
families who believe that the behavior modification treatments have saved their problem children's lives. True action against the JRC is yet to be taken. The least I can do to support the cause is provide some new updates. Just last year, a lawyer for the JRC defended these treatments as "humane" and referred to a report on the treatments made by the Mental Disability Rights International (MDRI) a few years ago as a "
joke." A few months ago,
a letter from an autistic survivor who attended the JRC was published. To say the least, the letter describes the most disturbing account yet. In February, a few actions were taken by Massachusetts and New York against the JRC that may have turned the tides against it.
The Patrick administration filed a motion that challenged a 20-year-long decree that has allowed the center to use the electric shock treatments.
New York City Counsilmember Vincent Gentile called for all children and adults from New York, which count for half of the student population, to leave the school. It is not yet certain when these actions will be approved and take effect, but it is clear that a few months prior to that, the Centers for Medicare and Medicaid Services are no longer allowing federal money to be used for anyone living at the JRC and that the US Food and Drug Administration has issued a warning on the center's use of the devices they used for the shocks that were never officially approved for medical use. The most significant update from that month, and the most important piece of information I have found on the matter thus far, is
a long expose of the JRC by The Boston Phoenix, written twenty eight years ago when the JRC was known as the Behavior Research Institute (BRI) located in Providence, Rhode Island before moving to Massachusetts and the aversive treatments consisted of excessive pinching, spankings, water spraying, muscle squeezes, brief cool/cold showers, and applying ammonia to the nose and harsh tastes to the tongue before the electric shock treatments were devised.
Even after all of the bad press and mounting evidence of ethical and legal violations being committed, I still find it hard to believe that the Judge Rotenberg Center is continuing to run its operations with the support of its lawyers, lobbyists, and parents who see no other option to deal with their children with mental, emotional, and behavioral problems that simply cannot be "fixed." But the recent developments I have described here represent a growing hope for its permanent closure. From a journalistic perspective, I admit that I have been rather personal in my Voice of Heard posts about the JRC. But as an autistic individual, I should be since there are more constructive alternatives to deal with autism in speech therapy and education, some of which I have experienced first hand. That experience had made it possible for me to make friends with other people (although I admit I have yet to lead a social life), be self-sufficient around the house, successfully navigate public places, get a college education, and pursue a career; all of this constitutes a productive and independent life something that people should help anyone with any disorder, autism and otherwise, to pursue without having to resort to punishing them for behaviors they have difficulty controlling. But the fact of the matter is that there are constructive ways to deal with autism across the entire spectrum as well as other mental, behavioral, and emotional disorders; the ones that are offered at the Judge Rotenberg Center are not among them.
Update August 17, 2014: In recent news, the FDA launched an investigation into the JRC's behavior modification treatments. It remains to be seen if the FDA officially rules them as unfit medical practices. More on that in a future post.
