The Justice

As a parent of an adult daughter with autism, I thank the students involved in this club from the bottom of my heart. There is so much we still don't know about what my daughter and her friends and colleagues with autism are experiencing physically as they struggle to be a part of the world. Behavioral "treatment" including aversives used to be a big part of her "educational" intervention, yet she always learned best from people who treated her with respect and were willing to develop a relationship with her, presuming her competence in the face of the "conventional wisdom" that people with autism are "limited" mentally and emotionally.

There is no outrage over what people are subjected to at Judge Rotenberg. Thank you for trying to raise the public's consciousness -- and conscience -- about this travesty.

Ms. Gonnerman's article "School of Shock," which appears in the September/October issue of the Mother Jones magazine, is an entirely one-sided and biased account of the court- and parent-approved behavior modification therapy used at the Judge Rotenberg Center to successfully treat, without drugs, severe (sometimes life-threatening) behavior problems of children and young adults with special needs that have not responded to any other form of treatment. For readers who would like to hear the other side of this story, please see http://www.judgerc.org/ResponsetoGonnermanArticle.pdf

Matthew L. Israel
Executive Director
Judge Rotenberg Educational Center
www.judgerc.org

As a former Special Education Teacher trained at a well-know school for children with autism in Massachusetts, I strongly protest the use of aversive therapies for anyone, especially people with developmental disabilities. Through the use of Applied Behavior Analysis (ABA) and a proper staff to student ratio, even the most severe behaviors can be addressed without aversive methods.

I have personally worked with individuals formerly served by the JRC at a non-profit provider agency after they became adults. There was no need to use aversive treatment to decrease dangerous behaviors for the people with whom I worked. Increased staffing with well-trained staff and intensive ABA with frequent rewards worked very well and was much more humane.

In my opinion, if the funds used to pay the tuition for students to attend JRC were applied to well-run behaviorally based programs which do not use aversive treatments, success could be achieved with all students. For adults, the funding for a person served through the Department of Mental Retardation is about $70,000 for an average group home placement. JRC receives far, far more than this. It is not a surprise that some families who love their children very much who are very desperate turn to the only resource that seems to be able to help. Our tax dollars should not support these methods. DMR and school systems should be able to spend the same amount of money that is eventually used for JRC as a last resort, to design programs with the right staffing resources.

Finally, touting that they are able to avoid the use of psychotropic drugs by using aversive methods is no endorsement. Many people with and without developmental disabilities use medicine to decrease anxiety and control mood. Psychiatry is an acceptable adjunct to good behavioral methods implemented by well-trained staff. The idea that JRC is the only model that can help certain individuals is false, and I have the personal experience to back up my assertions. Aversive treatment is a slippery slope, and seems to only be acceptable to apply to people with developmental disabilities and detainees at Guantanamo Bay. We are better than that as a society.

I appreciate that some individuals are giving great thought to the postings and their responses here?but I do believe that the views expressed by some have given little, if any, consideration to those of us who must make decisions for our loved ones. Simply put, we have enough to bear when we have severely handicapped children whose lives depend upon us. The additional burden of hours of time?often late into the night ?required in order to respond factually and truthfully to defend the very lives of our children is almost insurmountable?and, in itself, an immoral task placed upon us. I beg that those of you who believe you have a moral issue here think deeper below the surface of the morality you perceive as easily apparent. Become aware that we, the family members who have endured decades of unfathomable pain of empathy for, and decision on behalf of, our children, would come of necessity to realize deeper layers of moral and ethical question. Simply put, listen to what we have to say.

Other life and death issues are not precluded, just because we are dealing with the life and death issues of our children. For several days I could not post because 97-year-old Grandma Pearl (whose statement will appear in an upcoming post) has had an emergency hospitalization and I and other family members have been visiting her at the hospital, lengthening our very long days. Let me now tell you OUR ethical and moral reality?

I am a speech and language pathologist and audiologist who entered my profession before the birth of my handicapped identical twin nephews Matthew and Stuart, and have worked more than 30 years with special needs children and adults.

We must not dilute the issue.
We must be certain that a given treatment of last resort for a given condition is made available to those identified who require it.

In the case of a self-mutilating, self-blinding, child with a compulsive, self injurious behavior--SIB as it is known in the medical community?where all other interventions have failed (medical, behavioral, chemical, physical, etc.) we must utilize the treatment of last resort. We cannot allow that child to blind himself, cannibalize his own body parts, or excoriate himself to death.

I know of no one who has worked with my sister?s identical twin sons Matthew and Stuart, or has known the inexhaustible sufferings of our family, that has voiced opposition to the use of aversive interventions -- the only therapy that has kept my nephew Matthew alive. On the contrary, they emphatically supported these interventions.

There are syndromes in which an individual will compulsively eat off their own fingers (Lesch-Nyhan syndrome for example) ? and even when restrained they will chew off their own lips, rip out their own fingernails or even pull their own intestines out of their rectum. The professional nomenclature defines stereotypic movement disorder with the sub-class of severe self-injurious behavior (SIB), obsessive-compulsive behavior, and oppositional defiant disorder. Although not commonly known to the general public, there is legitimate, documented, unbiased, medical information available about these conditions and syndromes and their comorbidity.

Some individuals with these rare, but known conditions, like my identical twin nephews Matthew and Stuart, will engage in acts so horrific they are incomprehensive to people like ourselves.

Repeatedly, my nephew Matthew smashed his head into sharp pointed or spiked objects, and finally, strong enough at the age of 16 years, he successfully impaled his head on a sharp point and split it open?necessitating a 5-1/2 months hospital stay at Lenox Hill Hospital in New York City. He was kept barely conscious on multiple drugs and guarded 24 hours a day one-to-one, and yet he re-split his head smashing it directly on the wound and requiring re-suturing. He managed to run into the isolation room of a patient with a deadly contagious disease. And a teacher sent to his room refused to return after just one brief interaction with him?when he grabbed her head and attempted to slam it into the corner of a wall. Although he could be discharged after surgery to repair the gaping hole in his head, no one would take him in fear of his self-mutilating and deadly behaviors, and he languished in Lenox Hill Hospital those many months. My sister, Matthew?s mother, was asked by New York State to sign away her son Matthew's right to an education because New York State had no place for him. She refused to do so. Her husband, Matthew?s father, feared for the loss of the family home when he was told by the insurance company that they would no longer pay for Matthew?s hospitalization.

Matthew had no education?he had no life. On the contrary, the adverse effects of the psychotropic medications he was forced to take?the writhing movements that he endured?distorting his mouth, face, body, and limb, caused him to become completely unintelligible. He had been a verbal child, but for years he could not tell us his pain as the drug-induced dyskenias contorted his mouth and face. Our family members watched his tortured body and suffered with him. All of us in this family have traveled the agonizing course of waiting every moment of the day and night for one of my sister Lorraine?s, tormented and frantic telephone calls.

As a professional and academician who has worked with special needs individuals more that 30 years, rarely have I encountered such monstrous self-mutilation, debilitation and suffering at one?s own hands ?in the educational or medical arena.

Yet there is an intervention, a two second surface skin shock inhibits the behavior, and reverses years of physical and mental damage, destruction and self-mutilation. Matthew entered Judge Rotenberg Center in Massachusetts where such intervention is utilized to save a child from chewing off their own fingers or tongue, or blinding or excoriating themselves to death, a ?treatment of last resort? when all other interventions have failed.

The families of our children may, for decades night and day experience the fear of their child?s torment?and the fear of their child?s death?a slow and tortured death by self-mutilation like J.V., or an immediate death by riding a bicycle into a moving truck like K.B. Fear through the night and every waking moment of the sound of your child?s head crashing through a pane of glass, or in Matthew?s case?a sharp, pointed spike-like projection.

It is a matter of public record that J.V. (whose obituary appeared in the New York Times) and K. B. are two children who died when they were withdrawn from this type of therapeutic intervention. K. B. was returned to a New York State facility and drove his bicycle off the grounds into the back of a moving vehicle. J. V. compulsively ripped his flesh to the bone losing the use of his legs and confined to a wheelchair the last year of his life, when his infections could no longer be medically controlled, as the New York Times reported it, he died at the age of about 25. If the therapy is not available to those who desperately need it, others will die just like they did.

No one would take Matthew until he was accepted at Judge Rotenberg Center (JRC) where he now resides. When all other treatments have failed, JRC uses a COURT ORDERED, PARENTAL APPROVED, 2-second skin shock therapy, which Matthew has received to control his life-threatening, compulsive self-injurious behaviors (SIB) condition. Matthew has remained not only drug free in his current residence at JRC, he can speak clearly because his twisted and tormenting body movements gradually subsided as he was weaned from the drugs. Shortly before this posting Matthew called, as he freely and frequently does, to talk about his interests and activities. He enjoys his hobbies, dinosaur collecting, birds, his telescope, reading, visits and vacations with his family. Family members frequently visit Matthew on unannounced visits and are always welcome. Matthew participates in life and tells us he is happy and safe.

Stuart, Matthew?s identical twin, had been residing in a residence within New York State. Skin-shock therapy is legal in New York State, but it is unavailable, (which is why New York State sent Matthew to Judge Rotenberg Center in Massachusetts). Because of the medications Stuart is forced to take to "control" his behaviors, he now suffers some of the movement disorders his twin brother Matthew no longer has. These same "drug cocktails", none of which have been approved for use in these conditions, have not altered Stuart?s behaviors, but have only complicated them. Although never having been an epileptic, the medications have altered his brain so that his seizure threshold has been lowered and he has dropped unexpectedly in the New York City subway system -- we were called to an emergency room during a 12-inch snow storm recently because he was unconscious. Despite the medications, Stuart has had multiple and dangerous New York State approved aversive ?take-down? procedures. He has been handcuffed and removed from his residence by the police, and has had 5 emergency psychiatric hospitalizations in the past few years. On one occasion he attempted to hold someone's hand over an open flame--almost setting the two of them on fire.

We know Matthew is alive, enjoying his life, and safe. He tells us he is happy. We have pleaded with New York State officials to have Stuart placed with his brother at Judge Rotenberg Center. As of this writing, Stuart, (who once worked a full-time job in the community, but has deteriorated in a ?positive only? program), is at this moment, in diapers, in an acute care psychiatric facility for more than four months in New York for having bolted into city street traffic because (as he tells us) a string on his favorite chair was displaced. The hospital wants Stuart to leave; insurance no longer wants to pay; no facility wants to take Stuart; no one wants him because he is so unpredictable and dangerous to himself and others. WHAT IS YOUR MORAL ANSWER?

We know Stuart can die at any time, and Stuart tells us he is miserable. Stuart, like his identical twin brother Matthew, needs the same COURT APPROVED life-supporting skin shock therapy. WHAT IS YOUR MORAL ANSWER?

We would like both boys to be with us. We would like both of them to have a safe and happy life. WHAT IS YOUR MORAL ANSWER?

There is no issue. There is no controversy. No one who has not experienced or witnessed the "Sophie's Choice" brought upon our family should presume to decide for us, or to even consider withholding the only treatment that has kept one of our twins alive. THAT IS YOUR MORAL ANSWER!


Dr. Phyllis Klein

I am Matthew's grandmother. I am 96 years old, very much capable of speaking for myself and my family, and capable of speaking out against injustices done to people who are handicapped. Matthew goes to Judge Rotenberg Center.

Matthew had been in and out of hospitals and was unresponsive to positive reinforcements and only became worse from the medications he received. Finally, despite all attempts to keep him safe, he put his head through a spike and spent months in a hospital and had surgery to close his head. Judge Rotenberg Center in Massachusetts was the only place that was willing to take him from the hospital where he had spent more than five months. JRC is the only place where he has had a comfortable life for himself. Matthew would not be alive if it were not for JRC.

Matthew and children with problems like his who could not be helped in any other way, and who are now at Judge Rotenberg Center and doing very well, will certainly die as others have when they left JRC.

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" or presume to understand. You have never lived with our children or even talked to our family. THESE ARE NOT YOUR CHILDREN!

To the person that has written horribly biased statements I say: Deliberate sensationalized misrepresentation of Judge Rotenberg Center is false, possibly for your own personal greed. 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.

To those people who write I say: JRC has been open for our unannounced family visits in the many years Matthew has been a resident there, and all the members of our family visit him frequently and regularly. My children and grandchildren who surround and care for Matthew and support his needs are trained New York State licensed specialists in the field. Matthew's sister, my granddaughter, Dr. Ilana Slaff, is a physician and psychiatrist with a specialty in autism. His aunt, Dr. Phyllis Klein, has specialized in the treatment and care of non-verbal multiply-handicapped children and adults since before Matthew and his identical twin brother, Stuart, were born. The boys were treated in early childhood at Columbia University where his aunt studied.

They have had the best of care we could get for them. My daughter Lorraine and her husband Myron have traveled and stayed in Europe for treatments to help their twin sons. They would have gone around the world for them; they would have gone anywhere for them and they did, and they continue to do so.

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. He is currently in an acute care hospital in New York City in diapers since bolting into street traffic. He has been there for more than 4 months because no facility will take him--we have begged New York State to have him transferred to JRC where his brother is safe and happy.

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 haven't survived. 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,
Grandma Pearl

Does anyone unconnected with Matthew Israel, and unconnected with his school, support the claims made by Dr. Israel in the second paragraph of a Rotenberg Center web-page at http://www.judgerc.org/writeup3.html?

The relevant paragraph alleges "skin shock's remarkable effectiveness, its total lack of negative side effects, its safety, and the fact that students often choose it over alternative treatments."

Unfortunately, the only people who spoke out against this place in previous years were small religious groups like the Church of Scientology. This was used to smear anyone speaking out against the despicable practice, regardless of how wrong the actual practice is.

People should definitely attack proponents of such smears. The evil of the practice of aversive therapy and electric shock is not defended by complaining of protests by people you do not like.