Thursday, November 01, 2007

Autism's Rotenberg Dilemna

In Autism, Aversives and the Rotenberg School of Shock I set out excerpts from the Mother Jones Article School of Shock which described the use of aversives in treating autism and teen behavior issues at the Judge Rotenberg Educational Center. I commented on that article, expressing my own dismay that the use of electric shock aversives are still permitted in the US today. Matthew Israel, Ph. D. Executive Director of the Judge Rotenberg Educational Center provided a comment which can be found at that location and directs readers to go to a JRC site where Dr. Israel's response to the Mother Jones article, RESPONSE TO JENNIFER GONNERMAN’S ARTICLE, “SCHOOL OF SHOCK” , can be found.

I didn't find time to take a look at Dr. Israel's response until yesterday after being spurred to do so by reading some of the typical Neurodiversity, holier than thou, blogger commentary on Dr. Israel's response. I found that the "autism is wonderful crowd", while expressing the indignation that is almost invariably found in their commentary, did not really rebut or even address the very serious issues raised by Dr. Israel. In his response Dr. Israel referenced some extremely serious, even deadly, self injurious behavior, engaged in by some autistic children, including head banging to the point of brain injury, chewing of cheeks until holes are created, and self starvation.

Dr. Israel's position, as I understand it, is that even ABA, without the use of aversives, is not always able to address these dangerous behaviors. With the use of a mild two second shock, ABA techniques are used at the Rotenberg Center to satisfactorily address these dangerous behaviors and prevent further injury to autistic children and youths. The alternatives are to simply allow these behaviors and injuries to continue or to resort to undesirable treatments like psychotropic drugs and persistent use of restraints or isolation.

If I have misunderstood Dr. Israel's Response on behalf of the Rotenberg Center then I hope that he will again visit this site and correct me. If I did not then I would invite any professional with actual knowledge of these issues who might read this site to offer comment. Either to confirm the elements of Dr. Israel's response or refute them, in whole or in part.

I know that dangerous and even deadly self injurious behaviors are engaged in by some autistic persons. As the father of a profoundly autistic son I have seen him injure himself by biting and almost cause injury to family members. So far, we have dealt with such behavior through the use of non-aversive ABA approaches but that might or might not be sufficient as my son advances through the destabilizing puberty years. I take these issues seriously and I know that it is necessary to look at the hard realities and make hard choices. Information, and evidence, is critical in such difficult decision making.

I reacted with an "oh, no, are they still doing this" response to the story about the Rotenberg center's use of aversives in treating autism but Dr. Israel's response has given me pause to reconsider my knee jerk reaction. If anyone has any hard information and informed comment they can offer in considering these issues your comments will be welcomed.

It is one thing to say the Rotenberg center methods are cruel and inhumane. It is another thing entirely to provide a more satisfactory, effective, alternative in treating some dangerous and deadly autistic behaviors.

That is the Rotenberg dilemna.

11 comments:

Susan Handon said...

My name is Sue Handon and my daughter Crystal is a JRC student. She came there 3 years ago because every other school that she attended had failed to help her. She has Smith-Maginis syndrome. When she is maintaining self control she is the sweetest person you could ever meet. But when she is out there emotionally she is a danger to herself and others.
Crystal is deaf in one ear and severely impaired in the other due to self injuries to her ear. She is speech impaired, learning disabled, mentally retarded and emotionally disturbed. She has bitten herself so much until she has dark scar patches on her arms, hands and legs. She boke out windows and tore doors off hinges. The only solution offered me was medication to the tune of 10 different types daily. She became a guniea pig for Drs. Prior to her admittance to JRC she weighed 175 pounds. It was suggested that I start her on insulin because she started showing signs of diabetes.
To date Crystal has lost most of the weight, she is on no meds and doing well. This is because she has finally gotten a true Behavior Modification Plan.
It is not easy as a parent to make the decisionto agree to this type of treatent but it was necessary. Though I understand people's reactions to my choice of treatment I don't understand the lack of understanding for us as parents being placed in this position to make such choices.We have all tried many methods but this is the one that is working. None of us would hurt our children. We are just seeking help for them.

Anonymous said...

Dear Facing,

I was an elementary school teacher and my wife a school social worker when our son was born. Although we both had worked with children with challenging behaviors, we were not prepared for those that our son exhibited. "M" has high functioning autism with severe obsessive-compulsive behaviors. Only desperation compelled us, with our extensive background in the mental health/educational field and a deep love for our disabled son, to use a treatment that causes pain, albeit minor, but those medications our son took caused much pain and were not successful. It is difficult for those who do not have a severely disabled child to understand the desperation parents feels when they lose hope. To make a long and painful story short, M has been to several prominent psychiatrists on autism, numerous medications, reward-only programs, counseling, a special education day school and two out of state residential facilities. In fact, one residential facility dumped him into a psychiatric hospital because they could not control him. They had all failed!

Before we consented to have M receive the skin-sting therapy as a supplement to the extensive rewards program at JRC we tried it ourselves. We were skeptical that it would even work given our son’s challenging behaviors. However, within a couple of days of starting the treatment his major behaviors (aggression, property destruction and noncompliance) were drastically reduced. Even though “it doesn’t hurt that much” (his words) it helps him control himself and he receives applications very infrequently. M has continued to grow and progress in the last four years and is now recently received a high school equivalency diploma. This is from a student who made no academic progress in his three years of conventional residential schooling. Specifically JRC was able to get him to school on time, wear his glasses, do homework and have his behaviors under control in class so he could learn.

Ours is just one of many, countless success stories and so we ask - Why would anyone want to take a school like the Judge Rotenberg Educational Center (JRC) and shut it down? Where would the students go? Those other places failed them!


When M’s first residential school failed, the clinical director told us that if his second placement also failed, we should find a place where he would be comfortable (no demands) because that’s what she would do. Don’t we as parents have the right to decide if we want to warehouse our child on medication or give him a chance with a skin shock treatment?

JRC is also heavily regulated by agencies in Massachusetts and has numerous safeguards for the aversive therapy: parental, physician, individual court approval/monitoring and a independent court appointed lawyer to represent the student’s interest; continual videotaping of all residences, vans and the school; a human-rights committee of which my wife and I are members; two-person approval before an application is
administered; close supervision by an experienced psychologist; periodic reviews be done by outside professionals of any students with whom the GED has been employed for two or more years, and termination of aversive therapy as soon as it becomes unnecessary. The parent association also has its own lawyer. As you can see, the parents of the children at the school have not abandoned them. Rather, they have chosen the best possible treatment plans for them. Please note that parents are not compelled by the state to send their children to JRC. If they do have their children attend the school, they do not have to sign for the use of the temporary skin shock treatment. Furthermore, they can withdraw their consent at any time.

We do not see the use of a harmless two-second-skin sting, with no negative side effects, used on the average of once a week, and ended as soon as behavior improves, to be “cruel treatment.” It is a small price to pay to literally save lives, prevent self-mutilation and to give our children a quality of life they would have nowhere else. Having our children heavily medicated with ineffective psychotropic drugs, restrained for long periods of the day, placed in isolation rooms and warehoused “to control unpredictable spontaneous’ dangerous behaviors is the alternative our children face. We view that as cruel treatment!

We can be reached by mail at: Parent Association c/o JRC 240 Turnpike Street
Canton, MA 02021

Sincerely,

A P

Maya M said...

The reason I like your blog is that, despite some major differences in our views, we agree in the most important - that autistics have rights and must not be abused. Reading Dr. Israel's response to the "School of Shock" article did not change my opinion that the shocks given at JRC are outrageous abuse (though I almost believe in Dr. Israel's good intentions). I am sorry to hear that you were convinced, at least for the moment.
It is useful to remember that Dr. Israel's opinion about the value of shock treatment is a minority opinion among experts. If it wasn't, there would be more institutions like JRC in more countries. The conditions of patients ("students") at JRC have worldwide distribution; and for me it is hard to believe that doctors in Canada or Western Europe (where M. Israel's "advanced" method is not used) let their patients make holes in their cheeks or starve themselves to death. A hasty PubMed search showed e.g. an article by McAuliffe C. et al. (2007) in Suicide Life Threat. Behav. The authors say that self-injury should be addressed by "distress management and coping strategies".
This is, in fact, exactly what my experience and common sense of a lay person says. Why do people with autism and other conditions injure themselves? In the absence of contrary evidence, I find it safe to assume a "zero hypothesis" that they do it for the same reason as "normal" people - that is, as a reaction to unbearable physical or emotional pain. I can say for myself that migraine pain often makes me wish to head-bang and if I had it at age 5, I would probably do actual head-banging. Also, physical or emotional pain has made me more than once bite my lips, tongue, cheeks or hands. In fact, the tendency of pain sufferers to bite is so well known that sometimes before a painful manipulation the patient is given a suitable rubber object to press between his jaws. In any case, the self-injurious behaviour is treated by addressing the underlying problem - when possible, removing the source of pain, and when not, ameliorating the pain by medication. People do not respond to the self-injurious behaviour by inflicting more pain, and it seems contraintuitive.
Of course medication has its own harmful effects and its use should be minimal. However, it seems to me that Dr. Israel and his patients' parents have brought their dislike of medication to an obsession, preferring to have the parients tortured than medicated. I, personally, doubt that Dr. Israel and these parents would go to the same extremes if THEY were in pain (e.g. would insist to undergo surgery without anaesthesia).
Your views on the subject seem to be somewhat similar to mine. When Conor displayed self-injurious behaviour in his former school, you addressed the underlying problem and relaxed his unbearable strain by removing him from the school. And when you hear of autistic children head-banging to the point of injury after being locked in cell-like "time-out rooms", you do not suggest shocking the children. Instead, you blame the "educators" who have locked them.
I hope that some expert will visit and drop a comment more informed than mine (or publish in his Web site a rebuttal of Dr. Israel's rebuttal). As a true believer in science and medicine, I am sure that in the 21st century they can offer the patients something better than that.

Maya M said...

Excuse me for dropping another comment, but I've just read a post by "Shrek's mom" so much in line with my thoughts that I cannot help giving a link:
http://motherofshrek.blogspot.com/2007/11/hes-not-ill-hes-autistic.html
Briefly, her son (who is low-functioning) increased his head-banging, lost weight, lost his good sleep and all experts were careless, thinking it was his autism. However, the mother did tests and her son turned out to have an ulcer caused by the infamous H. pylori.
So I remembered the young woman who died at JRC because her "unwanted behaviours" were considered a behavioural issue when they were in fact a reaction to a perforated stomach.

Anonymous said...

I am the parent of a almost 15-year old boy with PDD, who has been attending JRC for over 2 years. Everywhere I read posts aout JRC, all they seem to focus on is the skin shock. No one is up in arms about the major crisis in this country that has our children being drugged with DANGEROUS psychotropic medications! These drugs have never been tested on children and continue to cause SERIOUS health problems, and even death. How come no one addresses this? I don't see any politicians going up against the current medical establishment who are little more than drug pushers. It makes me sick when I think about how many drugs my son was forced to be on with side effects such as abnormal liver function, high cholesterol, severe weight gain, seizures, hallucinations, suicidal & homicidal thoughts, paranoia, and psychotic episodes.

Most people don't know this but if you refuse to put your child on these drugs they can and will take you child away from you, and charge you with neglect.

Before JRC, my son was attending a school for Emotionally Disturbed children. He spent most of his time in a padded room, due to his frequent aggressive outbursts. He was drugged out of his mind and couldn't learn. The doctors had him on a minimum of 3 psychotropic drugs at a time. The school district had a 30-day outpatient evaluation done on him at a psych hospital where he received no less than 1 shot of Haldol a day. It was their conclusion that he be placed in a long term institutional facility. Essentially lock him up and throw away the key.

To me that was insane. Give up on my 12 year old son? No way! I was fortunate to find out about JRC and get him admitted there. He's been off the drugs for over 2 years now, and has made immense progress. His head is clear and he has caught up academically. His outbursts have decreased in frequency from several a day to once every 1-3 months. He told me he never wants to go back on those drugs.

Back to my point: WHY IS NO ONE BEING CHARGED WITH CRIMINAL CHARGES FOR DRUGGING OUR CHILDREN??????

Autism Reality NB said...

maya m

Alhough we have different perspecive, you are always reasonable in your commentary. And I respect that.

What do you say about the dangerous and even deadly behaviors for which some parents have sought treatment for their children, successfully, at the JRC? Is a 2 second "bee sting" type of shock cruel and inhumane treatment to rid a child of dangerous and deadly behaviors?

Ilana Slaff, M.D. said...

I have identical twin brothers with severe life-threatening behaviors extreme and rare even for persons on the autism spectrum. I have been practicing psychiatry over ten years and I specialize in persons on the autism spectrum. I recently completed an autism fellowship. Yet, I have only seen a handful of cases which can be classified as severe as my brothers. My daughter is also autistic. She is five, nonverbal but I am thankful she does not have the behaviors which my brothers exhibited, although I am in tremendous debt paying $90,000 for one year tuition for her school, plus speech, occupational and physical therapy. For her first month of school I had to drive her every morning and start my job at 11 AM, leave at 7:30 PM, get home at 9PM and do the same the next day. Thank goodness my extended family has been supportive. Her school does not employ the use of aversives and she does not need it. I did try to get her into a public school which was appropriate for her, but they only accepted seven children from all of New York City last year and my daughter ended up on the lottery wait list. When I attended the lottery there were many parents in tears. If NYSED (New York State Education Department) truly cared about these children there would be an appropriate placement for each and every child. Public school programs here many times are not providing the services which are in the child's federally mandated Individual Education Plan. New York City public school autism programs are also using methods with no scientific evidence such as the Miller method and the Option method when there are methods with scientific evidence. Using an invalidated method when there are validated methods to treat a condition is unethical. I do not understand how people can take NYSED reports seriously when many of their own public schools are not in order.

Regarding my brothers, one twin has lived at JRC for
almost twenty years. Before arriving there he banged his head so severely he had to have surgery to close it. He would bang his head suddenly, even during the night without a clear reason. He was in a hospital for over five months, and my parents were told his insurance was running out and they would have to flip the bill. He had no education in the hospital because he attacked the teacher. He also became very sick from the medications used to try to control his behavior. He had obesity, drooling, sedation and tardive dyskinesia. At one point he could have died from neuroleptic malignant syndrome from his haldol. The medications did not control his behavior. In the hospital he had one to one at all hours and he still needed repeat suturing for repeated head banging. The board of education requested my parents waive my brother's right to an education. They said there was no place which would take him. My mother found out through her internist about the Judge Rotenberg Center. We got him transferred within a few days of the insurance running out. He was taken off all his medications there although he still has permanent tardive dyskinesia. He is happy there and states he wants to "stay at JRC forever." He enjoys the reward store and going on trips such as the zoo, museums and special olympics. I am calm to put him in the back seat of my car with my small children and take him out. (Prior to arrival at JRC he would attack my mother while driving). He does receive skin shock on average once to twice a month. At times he will actually ask to wear the device because he knows it gives him boundaries. Most of all, head banging is a thing of the past.

I will now discuss my other twin brother. He once did very well. He had full time job for two and a half years and traveled independently. He moved into a group home during this time. One day another worker was teasing him and repeatedly was telling him he had to work until 5 PM when my brother knew that he leaves at 4 PM. This was a fixed routine for him. My brother became so agitated he grabbed the other worker's butcher knife. I understand that my brother had to be fired. Since then, he has gone down hill completely. He started to develop a compulsion regarding fires and tried to place himself and someone else on fire. He has run into traffic. He also was aggressive, tried to punch and choke others for a minor problem, i.e. a staple being out of place on a chair. He was placed on about fifteen different psychotropic medications in various combinations. He developed obesity, sedation, hypotension, tardive dyskinesia and generalized seizures, once on a subway platform during a snowstorm. The medication has not been helping his symptoms. He has been hospitalized since July. His group home understandably is unwilling to take him back and New York does not want to fund Judge Rotenberg Center for him (and he cannot live with his closest relative). After four months in the hospital, they have now suggested the Brooklyn Developmental Center which I will visit next week. I think even the Judge Rotenberg Center positive behavior program may be sufficient for him as there is consistency there. He did well in his day school when he was younger. Unfortunately in New York State the agencies funded to treat persons over the age of 21 do not have direct care staff appropriately trained in the principles of applied behavior analysis and consistency of a behavior plan is a problem in the agencies. My brother never required medication
when he was in his structured and consistent day school program before he was 21 or when he had his job. I feel for some of my patients who have behavior problems and they just get suspended or terminated from their day programs. They are home, some possibly dangerous and overwhelming their caregivers beyond belief.

My parents tried different approaches to my brothers, even took them to a doctor in Europe for a treatment. My grandfather spent about half his life savings to finance the trip. There is no medication which has shown to be 100% effective to control behavior like my brothers have. Positive behavior interventions are not sufficiently effective in all cases to suppress problem behaviors and there is a meta-analysis in 1999 that clearly shows this. As far as other methods proposed such as TEACCH and sensory integration, I think they can be helpful for some symptoms but they have never been shown to sufficiently treat the types of behaviors my brothers' have. In fact a small study on sensory integration resulted in an 11% decrease in the frequency of self-stimulatory behaviors. This does not cut it for a life threatening condition. However, there have been 111 peer reviewed articles on behavioral skin shock. I received the New York Medical College Award for Academic Excellence for my research on medication and behavioral skin shock to control life-threatening behaviors in persons with mental retardation or autism. Medication can sometimes be helpful but results are mild to moderate to decrease frequency of behavior. Behavioral skin shock gets on average an almost 100% decrease in frequency of behavior in subjects. My brother would be dead without this therapy and my other brother is dying.

Imagine if you had an illness requiring surgery to your head and you were told this illness could be otherwise treated with a two second skin shock once or twice a month (which is my brother's average). Imagine if you had to give yourself repeated insilin injections and you were losing your eyesight or having a heart attack (side effects of medications plus more) and someone told you that these illnesses can be prevented and you can live years longer with a two second skin shock once or twice a month? Perhaps you rather have disease or injury. Perhaps not. Whatever you may decide, only my brother's family has the right to make that kind of decision for him.

To have a family member with special needs is stress enough. To be in financial debt is more stress and to have to deal with life threatening behaviors is even more stressful. I find the criticism directed toward the Judge Rotenberg Center to be further stressful. I feel my family is being judged and marginalized after all we have already been through.

Autism Reality NB said...

maya m

You didn't answer the question in my last comment to you on this thread? The questions was:

"Is a 2 second "bee sting" type of shock cruel and inhumane treatment to rid a child of dangerous and deadly behaviors?"

Maya M said...

Mr. Doherty, I was offline and I am only now reading your question.
My opinion is that - yes, it is.
The reason why I think so is that I wouldn't ever agree to subject myself to such behavioural therapy, no matter what. (Of course there is no such need now, but there could be, if trauma or disease damages my brain, causes self-injurious behaviour and decreases my functioning level, transfering the decisions about my fate to other people's hands.)
And after I wouldn't accept a treatment for myself, under any circumstances, I am just obliged not to accept it for anybody else. (The Golden Rule).
As far as I know, all "students" at JRC have been sent there by their parents (or whoever is their legal guardian), typically before turning 18, though many remain there for years after coming of age. I also have the impression that some individuals with severe self-injurious behaviour are fairly high-functioning (not in the sense of "able to live independently without services", but in the sense of "having enough cognitive ability to take legitimate decisions"). Then, why don't any of them send themselves to JRC? Is the treatment at JRC one of the things people find appropriate only for other people?
Also, my lay person's intuition suggests that if a behaviour can be addressed by "a 2-second bee sting" (esp. if applied once in a week or month), then perhaps it could be addressed by other methods, and if it is resistant to other methods, then it is likely to persist even if reacted to by shocks - and I guess this is the situation with "students" who stay at JRC for years.

Anonymous said...

There's a moving parent perspective online, a powerful testimony to the Ontario Legislative Assembly.

Mr Gregory MacKinnon: Thank you, Mr Chair. Our submission has specifically to deal with subsection 66(12). I'll just start.

Honourable members of the standing committee, we thank you for allowing us to address you here today. We are here as parents and we have lived in a world that, fortunately, few parents see. Our daughter, Katelyn, suffers from severe self-injurious behaviour, and we don't use the word "severe" lightly.

In late 1992, when it was clear that Katie was not responding to the usually effective methods of dealing with her SIB, we were forced to make decisions that few parents must make. We could restrain her physically for 24 hours a day, with straitjackets and tie-downs. We could chemically restrain her and risk organ damage and other side-effects that neuroleptic and anti-psychotic drugs cause. We could place her out of the home, or we could use the SIBIS, the self-injurious behaviour inhibiting system.

We decided to use the SIBIS. It was prescribed by Katie's paediatrician, a caring and knowledgeable man who treated her for all the usual childhood conditions in addition to her self-inflicted wounds. The SIBIS delivers a small shock to the fatty part of Katie's thigh when she hits or bites herself. The shock is localized to the thigh and is more startling than painful.

Had Katie been born 20 miles to the east, and subject to the provisions in Bill 108 and Bill 109, we have no doubt that today Katie would be totally incapacitated by restraints, she would be sedated into complete inactivity, institutionalized, or worse. Instead, Katie is a happy, healthy 11-year-old with severe autism.

To better understand what would lead parents to make a decision like this -- to use an aversive device like the SIBIS -- and to put that decision in context, you should be aware of Katie's life so far.

The rest is at http://www.ontla.on.ca/committee-proceedings/transcripts/files_html/1996-02-15_j011.htm
Scroll down to '1030'.

Anonymous said...

When you have an autistic child who suffers from treatment resistent self-injurious behavior you are in a world apart from challenges associated with autism. The thing most people forget is our self-injurying children mutilate themselves for about fifty different reasons. For instance, if a car alarm or dark barks. My son smashes his fists into his head. If he's hungry, thirsty, tired or has a wet diaper, he hits himself. Likewise, if he has a toothache, headache or anything else that could cause pain, he would hit hismelf, though we must go through an exhaustive mental list and battle doctors to test for underlying disorders before we can confirm if there is underlying issues. Not to forget when they self-abuse, you can't wait in the doctor's office or get a proper exam because the doctor can't get near them. In comes the skin shock. In order to evaluate medical issues, your self-mutilating child must be able to undergo a physical exam. Get blood drawn. Stool samples. Body scans. Good luck getting medical or dental help for your child without a skin shock controlling the behavior! Last timem we took our son to the neurologist, we couldn't even have a conversation until he got two quick skin stings,which immediately calmed him down. Then, we took him downstairs to get blood drawn, where he smashed his head into the walls despite three people accompanying him. Great fun. Anyway, so we put his arm out for the nurse to draw blood and he's fighting us like crazy, smashing his head into the counter and thrashing himself around. A good time for all. So, I whip out the skin shock again. He gets two shocks. He calms down. He's happy and laughing. We get the blood drawn. We go out to dinner. He's still happy. We go home. That's the realiy we and others live. We choose not to give our children chemical lobotomies. We choose to give them acute care in times of severe self injujious attacks in the same way people who have heart attacks get a shock from the defibrulator to stabilize their lives. Have some sense, okay? Get some wisdom. Have some compassion and get off your self-righteous judmental soap box against aversives. Your ignorance and intolerance towards the rights of a rare population who require skin shock is outrageous.