The Boston Globe ran an op-ed today that perfectly characterizes a key failure of American journalism: that is, it reports on a medical question that can be answered by scientific research, but fails to even mention that such data exists or should exist.
The piece, headlined "Shocking Truths," claims that the arguments of critics of the Judge Rotenberg Center -- who oppose its inhumane electric skin-shock treatment of people with developmental disabilities -- are "too pat." The Department of Justice is currently investigating the school for human rights violations, after complaints from disability rights advocates.
Those concerns are groundless, author Lawrence Harmon argues. His proof? A five hour visit he made to the school in which he saw "nothing inhumane." Sure, he concedes, abuses have been found in the past -- but that's no reason to pay attention to the opposition of no fewer than 31 major disability advocacy groups.
As shallow as this reasoning is, it hides an even more profound failure of critical thinking. Harmon accepts at face value the claims of the school and of parents of students who support it that skin shock treatment "works" and is superior to what he calls "stupefying" doses of medication sometimes used by other programs.
But this is an empirical question -- and in decades of advocating a treatment its victims compare to "an attack by a swarm of wasps" -- the Rotenberg Center has yet to produce a single randomized controlled trial showing that its approach is effective -- let alone superior to others.
Rhetorically, Harmon asks, "Why do no practitioners other than Israel [Rotenberg's director] adopt this approach? Do they view skin shocks as cruel or do they fear the outcry of disability advocates and inevitable probes? Is skin shock, in some cases, a more humane treatment than heavy drugs and mechanical restraints?" He has a psychiatrist answer that he "doesn't know."
The disability rights groups know, however: they know that there is research from randomized controlled trials that supports other, more humane approaches. They know that there is none to support Rotenberg -- and they also know that research increasingly shows that sensory oversensitivity is a huge part of the autistic spectrum disorders often treated at the center. Given this, use of painful stimuli could be even more harmful to autistic kids than to others.
Using science to make medical decisions is not making a pat or black and white argument -- it is the same method that the FDA uses to clear drugs for marketing. If they are not first proven safe and effective, medications aren't allowed to be sold to the public. That standard is good enough for medications -- why shouldn't we use it for other treatments that can potentially do harm?
Why should we have lower standards for a skin-shock treatment used on our most vulnerable children? Parents' anecdotes and those of clinicians who profit from skin shock treatment aren't enough: you can find plenty of these in support of harmful, quackish cancer treatments, too. The fact that Harmon thinks that these anecdotes prove anything just shows how low his standards of evidence really are.
The Justice Department is right to have answered the disability rights groups with an investigation. It should conclude that the Rotenberg Center is conducting an unauthorized and inhumane experiment -- and refuse to allow any further use of its approach until it can prove that it is more effective than more humane alternatives. Given that the center hasn't been able to do that in its decades of existence, the program should be shuttered.
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“To use punishment occasionally out of desperation is not the same as advocating punishment as a principle of behavior management." Advocating to use painful, intrusive interventions because we don't know what else to do, is not a justified treatment.
To the critics, this comment is from a 15 year old boy who wishes he were living back home with his own family, but realizes that isn't possible because of his behaviors. He see the GED as a means to help him accomplish this goal.
Dr. Israel has done so much to help these children. He has build such a nice school for the children to come to during the day, an atmophere conducive to learning. Dr. Israel deserves applause for his efforts. Thank you Dr. Israel for helping my son.
The critics of JRC shouldn't speak for the parents of the children who attend the school. "Walk the walk and talk the talk". Let the parents of JRC's kids do the talking. You have no idea what we as parents are going through with our children. We were fortunate to find a school like JRC that treats our children with respect and dignity and you want to take that away from us. How ungreatful and insentive of you. MY son has been at JRC now for five and one half years and is making progress. He has been on the postive reinforcement program since admission, however now it seems beneficial for the "skin shock" therapy to be a tool in his treatment program. I, myself, have experienced an application of the "skin shock" and I agree it gets your attention, but it's over as soon as it starts without any harmful effects. I didn't jump out of my seat, I didn't walk around holding my arm looking as though I was in alot of pain and I didn't scream. When I was visiting my son at JRC last fall I took him out on an outing for some fun and games. My son asked me "dad why can't I have the GED like some of the other kids? I know I have trouble controlling my behavior and I think the GED would really help me".
Before JRC my son was drugged up. He looked like a ceramic doll. He would talk to me in a monotone voice without any expression with his eyes closed. He was drugged up because his local school district here in New York couldn't deal with him. I was told not to bring him back to school. No other school here in New York wanted him. To the critics isn't that a comforting thought? No one wants to deal with your child because of his noncompliant and agressive behaviors? I had to look to out of state placements and he was rejected by them. At least these out of state schools were honest in telling me they couldn't deal with his needs.If I hadn't found JRC my son most probably at this moment in time would be lying on a cold concrete floor at some state institution in a semi-conscious state. When my son was born I didn't envision him living in a residential school. I thought my son would be living here in New York with his own family. JRC could be located in China for all I care, but if that's the place that can accomodate his needs, I want what's best for my child and I would sent him there in a heart beat.
Dr. Israel welcomes these children with open arms. His first thoughts when seeing a poor wretched, drugged up child is how he can make a difference in this child's life. How he can give this child some "quality of life". When as Mr. Harmon writes an article that truthfully depicts JRC, the critics come out of the woodwork to launch their steady berage of attacks against the school.
Why is it that the critics, the adversaries of JRC seems to have all the answers? Their conclusions are the only correct solution in dealing with the children at JRC? They put themselves on a pedestal,self appointed authorties, high above the school, JRC, and the parents who wish to send their children there. The critics openly say the parents of JRC are "brainwashed" and "manipulated" by Dr. Israel. Nothing could be further from the truth. The parents can remove their children from JRC at any time. Freedom of speech is such a valuable priviledge we have in the U.S.,but it must not be abused. Why do the critics of JRC want to close the school when we the parents wish to keep our children there? We,the parents, see our children's behavior improving. Our children are receiving an education and are learning new skills. Our children are safe there at JRC.
to as a "cocktail"? I can't believe the children advocates can be so blind and not be outraged by this practice. Are these medications healthy for children? Are there peer reviewed articles published in professional journals supporting these practices? Somehow these drugs magically disappear into a child's body and since one cannot see the damage these drugs are causing to the child body the slogan "out of sight, out of mind" prevails. Advocates of children's civil rights where are you? You're so quick to attack JRC for using the "skin shock" therapy, but you are so quiet or invisible when abuses are being perpetrated by the big drug companies.The "skin shock" device gets a child's attention and the child stops the inappropiate behavior. The "skin shock" device isn't used as a punishment, but a tool to modify a child's behavior. Its use is to achieve a positive result. Thank God there is a person in the name of Matthew Israel, yes, the very same person who is the director of JRC, who can see the light, has a vision and can put it into practice by building a school to help the most helpless and hopeless citizens of our society. The outcasts of other programs are dropped on his doorstep. No one can help these children or so say the administrators of other schools.
I noticed in the AARP Bulletin Newsletter on the second to the last page of the October 2009 issue they list the 50 most prescribed drugs in the U.S. and the profits they generate. Some drugs generate profits in the hundreds of millions and others in the billions. This is big business. Just think of all the jobs it creates from the drug companies themselves with all their departments, all the pharmacies that dispense the drugs and all the doctors and psychiatrists that write the scripts. Yes, the drug companies help thousands of people enjoy a higher quality of life or even life itself. However, drugs prescribed for adults that are approved by the FDA for adults should not be given to children. It is illegal. I guess that since the drug companies are so big and powerful they can persuade the government to look the other way and not notice this abuse? Why aren't the children advocates outraged by this practice and demanding a goverment investigation? My family physician a few years ago told me that these phychotropic medications are powerful drugs. Why is it that children on these medications fall asleep soon after taking their dosage? These powerful medications are akin to shots of liquor consumed by alcoholics. The same end result, they fall asleep. In fact the medical profession refers to the taking of several medications at once as a "cocktail". Isn't it ironic that a mixed alcolholic drink is also referred
Dr. Israel and his staff are doing such an incredible job helping students turn their lives around. JRC takes the students off of all medications, allowing them a "window of opportunity" where they can learn and receive an education. Other schools medicate children for self abusive, aggresive and disruptive behaviors. The children are warehoused. They are put on several medications referred to as a "cocktail". Most of the day the child sleeps which in the schools' eyes is good for two reasons. #1 if the child is sleeping he or she isn't causing any problems to themselves or others and the teachers and aides can enjoy a less stressful day and #2 if a child is sleeping the school can still be paid for having the child in the classroom. It's a win-win situation. I mentioned a few lines back that a child sleeps all day in the classroom. This isn't totally accurate as a child is awaken once or twice during the day so the school nurse can administer more medication to the child. One important question: "how is the child receiving an education preparing him or her for the future"? Medication distorts and clouds a child's mind. Furthermore, what about the short and long term effects of antidepressant and psychotropic medication? Isn't that a legitimate concern?
RE: Shocking Truths by Lawrence Harmon of The Boston Globe on March 9, 2010
Dear Maia Szalavitz,
I respectively disagree with your conclusion concerning The Judge Rotenberg Educational.
I would like to commend Mr. Harmon on a well written, objective and unbias article concerning the Judge Rotenberg Educational Center. I applaud his honesty in writing an accurate and truthful depiction of JRC and not having to distort the facts of how this Center operates in order to sell more copies of his story. Other reporters have written about JRC depicting a very grave and evil place, intentionally distoring the facts and appealing to the Civil Rights Advocates that JRC should be shut down. It's easy to misrepresent the "GED" device i.e. the two second "skin shock" as ECT or even electrocution. This misrepresentation and deliberate distortion of the facts raises eyebrows and evokes instant rage, "how could a place in this time and era in the U.S. exist?" and "why isn't the government doing something to protect these helpless and innocent autistic spectrum children from this abusive torture?" This kind of journalism sensationalizes a story to attract its readers attention for the sole purpose of selling more copies. More readership and more advertising equal more revenue and in these dire and painful times it can make or break a newspaper or magazine. Again kudos to Mr. Harmon for a true and accurate story.
.
Lets take the Myelin project for example; AKA Lorenzo's oil. Augusto and Michaela Odone fought hard to find a cure for their son's incurable disease. They had doctors, support groups and people that fought against their struggle. People that felt they knew what was best for their son and his incurable disease, and they all gave up hope and said Lorenzo would die. Augusto and Michaela would not accept this prognosis and fought to find a cure, and they prevailed; they found an effective treatment for their son's disease. The battle they fought to save their son was very similar to what these parents are faced with. Why take away their only hope.
Matthew’s identical twin brother Stuart has a similar problem, and to our misfortune he has steadily regressed as his behaviors deteriorated over time, despite every intervention that has been available in New York City where he lives. It is tragic that Stuart and many other children with similar problems, whose families have been desperate to help their children, are denied this life-saving treatment because it is not available in New York State. Many will not survive. I worry each night that Stuart could die a horrible death because he does not understand that his self-destructive and dangerous behaviors could kill him.
From Matthew’s and Stuart’s distraught grandmother,
Pearl Klein
Our family is very happy with the life Matthew has at JRC and he tells us he is happy too. He travels with his family, goes out on day trips regularly with his school, and calls me on the telephone a few times a week and I speak to him from my home in New York City. I often visit him with other family members. We could never imagine unfortunate people like Matthew could have such a wonderful place to stay.
Those who have not had a child like ours should not talk about “Our Children” as people have done. To those people I say: You have never lived with our children nor studied their conditions. THESE ARE NOT YOUR CHILDREN! If these children are hurt because of your statements, you will need to live with your own conscience because other children have died when they left JRC. You know there has been no other treatment for them that has worked and that is why each case has been through an impartial court hearing that has determined that they must have this treatment.