Aversive Therapy for Autism: A Tool for Good or Evil?
This horrific story seemed to me to be an example of absolutely indefensible mistreatment of children - something out of a Dickensian past. But recently, the New York Times ran this story:
Nearly a year ago, New York made plans to ban the use of electric shocks as a punishment for bad behavior, a therapy used at a Massachusetts school where New York State had long sent some of its most challenging special education students.I assumed that the parents cited in this story were unusual... or that, perhaps, their children were extraordinarily violent. To get more of a reality check on attitudes towards aversive therapy for autism, I checked in with some well-respected autism bloggers. And I found opinions to be suprisingly mixed.But state officials trying to limit New York’s association with the school, the Judge Rotenberg Educational Center in Canton, southwest of Boston, and its “aversive therapy” practices have found a large obstacle in their paths: parents of students who are given shocks.
“I understand people who don’t know about it think it is cruel,” said Susan Handon of Jamaica, Queens, whose 20-year-old daughter, Crystal, has been at Rotenberg for four years. “But she is not permanently scarred and she has really learned that certain behaviors, like running up and hitting people in the face, are not acceptable.”
Harold Doherty, in his Facing Autism in New Brunswick blog, notes:
If an effective aversive treatment is going to be taken out of the hands of the Judge Rotenberg Education Center what will replace it? Ineffective drugs, physical restraints? Purely positive interventions even if ineffective? If the political correctness crusaders prevail will they accept responsibility for children with autism and other disorders who then go on to engage in self mutilating behavior and aggression to others?Kristina Chew, creator of the AutismVox blog, does not support the techniques, but makes it clear that she understands why it might seem like the right choice:
Maybe my son’s head-banging was not the “most extreme” of cases. But I can you assure that, the night Jim and I looked at the jagged glass left on the window Charlie had kicked out and Jim knocked out the bits with a hammer, and I donned gloves and dropped them into the garbage, I was not so sure what alternatives were left. Hope came, not from someone proffering electroshock treatment, but from Charlie himself, from Charlie struggling not to swing his head and to “calm down” when he got upset and to ask “I want to go for a walk!” when another child started to cry in a high-pitched tone. Yes, Mr. Flammia, there is hope. I would prefer that my school district, and my family, spend $228,000 (a year’s tuition at the JRC), to teach autistic children.In looking for a truly dissenting opinion, I checked out Whose Planet Is It Anyway, a blog that's dedicated to the autistic civil rights movement. I did find a strong statement about Rotenberg - but it was written long before the recent court decision or the hoax that led to "extra" shocks. There are no more recent entries than this one from November 2:
Many bloggers and human rights groups have asked why the State of Massachusetts can't shut down the Judge Rotenberg Center. It's for the same reason, as I see it, why the people of America haven't yet shut down Guantanamo Bay—too much apathy among the voters and too little insistence on demanding accountability from our elected officials. We lack full awareness of our personal power as citizens of a democratic nation to force our government to conduct itself in a decent manner. People talk to each other about such things and say, this is terrible, or that is awful; but then we just sit back and wait for someone else to deal with it.Why hasn't this blog been updated with further information about Rotenberg? Perhaps there are more important issues out there - but I was surprised that the call to action hasn't been renewed.
I recognize that,as the parent of a child with high functioning autism, I live on the margins of the typical. And so I tend to see things through relatively rosy lenses.
No, my son isn't able to attend a mainstream class and learn. But yes, he is able to play in the band without a support person at his side - and without special accomodations for managing noise or crowds. And while it's true that he acted out aggressively at the age of three, he was young enough to be forgiven, even by the grouchiest teachers. Today, while he won't look most people in the eye on the first meeting, he would never in his wildest dreams whack another person on impulse.
Maybe my perspective is simply warped by my reality. And perhaps, if my son were self-injurious or injurious to others, I would have a very different perspective. It's impossible for me to put myself into the place of parents coping with such overwhelming issues - or of those individuals with autism who are now living at facilities like Rotenberg.
It's tough for me to imagine that a person who is never maliciously hurtful could possibly benefit from being deliberately injured. But I hear others I respect saying otherwise. And while there are calls for action from the neurodiversity community, they don't seem to be as front and center as I'd expected them to be. Several editorials in the Boston Globe speak out on the issue - but none are written by people actually living with autism.
What's your perspective? Is there a place for "aversive therapy" in 21st century autism treatment? Make your opinion known!
Comments
Lisa do you mind if I cross post this onto a couple of UK ASD forums. To say that I am shocked would be a total understatement.
Of course it isn’t acceptable. It never was. It never will be. Bet if we woke up Matthew Israel with a cattle prod for snoring he’d change his tune real quick.
They don’t even TEACH there, take any kid who’s been kicked out of anywhere regardless of diagnosis (if there even is one) and put electrodes on them. And shock for anything. Completely obscene. Bet Crystal does have scars, just because you can’t see them doesnt mean they arent there.
Although I am completely against shocking, I must acknowledge that some reputable experts claim that in a few — very few — cases of extreme self-injury, shocking may have a beneficial effect, but it should be done in a clinic (not a school), with a large team of physicians and other professionals closely monitoring the shocking, for maximum of only a 2-3 weeks, and that shocking should be given in a timely manner so that the shocking is effective learning. I doubt if any research has been allowed on shocking as therapy, though. My understanding that there are no institutions willing to take on this specialized care, but rather recommend positive reinforcement and patience supervision, which is backed by good research. JRC has demonstrated a cavalier attitude regarding the use of shocking, isolation, restraints and nutrition manipulation that, in my book, constitutes criminal child abuse. Just because some very vocal parents want shocking for their children should not be justification for government to provide it. Heaven knows, there is a long and dismal history of parents claiming to be well-meaning and desperate who have subjected their children to many awful treatments, e.g. horrific boot camps, floggings, starvation, attachment therapy, as well as withholding needed medication/medical care. For myself, I would let research rule. As for shocking in particular, it is highly unlikely an reputable human subjects review board would ever allow research on shocking anyone.
Those who have been following the JRC know that this prank was not a freak incident. The very fact that staff members would shock a student 77 times in three hours reveals deep flaws in the philosophy and culture of the Judge Rotenberg Center. Aversive shock treatment induces students to temporarily comply with directions out of fear of physical pain, but they revert to their former behaviors once the aversive is removed. Even B.F. Skinner, originator of the technique, eventually denounced it. Painful aversive shock treatment, along with alleged methods like food deprivation and isolation, leaves only emotional trauma and distrust for authority. Americans are concerned about waterboarding of enemy combatants, yet our school boards fund an institution which straps our most psychologically fragile children to boards and shocks them repeatedly. This abusive practice, better described as torture, must end as soon as possible.
We’ve started a group at Brandeis University, and hope to garner more widespread support. Please join our facebook group “Massachusetts Students United Against the Judge Rotenberg Center”, or email me at lizaveta@brandeis.edu if you have any questions or would like to be put on our mailling list.
If you’d like to take more immediate action, please call Governor Deval Patrick at 617-725-4005 (out of state) or 888-870-7770 (in state) and urge him to follow the lead of Washington D.C. mayor Adrian Fenty, who has promised to remove all D.C. students from the Judge Rotenberg Center.
I am the attorney in NY sueing the JRC for abuse of children and your comments are based in fact and there are varying opinions on the need for aversive therapy. Hopwever, the real facts of the abuse of treatment are well documented. High functioning children are shocked while tied down for just saying No to a request in the guise of stopping antecedant behavior. The shocking device is manufactured by the center and never tested BUT many children receive shocks at four times the level of others and testimony shows that these children are screaming in pain and falling to the floor when zapped. Licensed professionals are not making decisions and licensed teachers are scarce. There is so much more. Children, because of lack of trainning are shocked in their testicles or spine and prank phone calls lead to hospitaliztion. The reports certifying the place only do so conditionally but nobody ever checks the condition. Does this seem consistant with the treatment of any child who is considered special? I doubt it!
Dr. Israel would like people to believe that shock treatment is reserved for only the most severe behaviors, self-abuse and aggression. But it is simply a lie. Children are shocked for petty infractions under the pretense of so-called antecedent behaviors all the time. Closing their eyes, stopping work, standing up, speaking out of turn, literally looking at you the wrong way will earn a child an electrocution. Say a student repeats himself BECAUSE HE’S APHASIC, he is shocked for “nagging”, repeating himself. One student I recall had an extremely low IQ and simply was unable to learn how to avoid shocks was then put on the highest level of shocks. He was a very small seven year old, who was COVERED in scabs from the “treatment”. Tortured, beaten, broken, and then BEGAN aggressing on staff when he had no prior history of this. He became dangerous. This place is warped on so many levels I can’t even begin to describe it. Word are really not enough to describe it
According to my understanding of how the 24 volt GED is configured with spread electrodes, pushing the GED button 77 times, results in 154 shocks.
I hope the Brandeis students stop blogging and get the Univerity’s pathologists involved so that the 24 volt GED’s damage can be scientifically evaluated. According to my math, there are a whole lot of Joules in 154 two second shocks.
And I hope Mr. Mollins stops blogging and starts his discovery before he distroys his client’s case.
My opinion is that if you do not have a child suffering from autism, you have no right to chastise parents who do!! Walk a mile in thier shoes and you may be very surprised how your opinion can change. However, I must state that there is no “cookie-cutter” therapy, behavior modification technique, medication, or anything else that will always work for each individual. They are INDIVIDUALS!! No two people are them same! Different things work differently on different people. Thank god there are professionals who understand that some “alternative treatments” may produce positive results. I in no way condone cruel treatment of any person with a disability, but, I do keep an open mind to the concept of alternative treatments. Each of these children will grow to be adults and it is all of our responsibility to see that thier lives are as meaningful, happy, and productive as possible.
Our 16 yr old is aggressive toward himself and others, pinching to bruise, scratching to scar, and biting (one bite required a skin graft to patch — not on himself). But hooking him up to a device others activate when they “catch” him at one of these behaviors won’t be any more effective than spanking, slapping, or time-outs (a few of the family of aversives most people are aware of). For our son, consequences do not come from the outside. He has an issue, he deals with it in a way that is meaningful to himself: hurting himself or others until the issue is diminished enough that he can attend to other things.
Most of us neurotypicals (n.t.’s) have internal ’shockers’ that prevent us from taking our feelings out (physically) on others — autism, by it’s very nature prevents knowing or caring about how one’s actions affect others. To the person with autism, whether others approve of their behaviors (hand flapping, twirling, obsessing, picking, tearing, head banging, vocalising, hitting, kicking, biting) just isn’t relevant. A higher functioning person can be taught to ’stim’ privately, for the same reasons most n.t.’s can be taught to use a tissue to mask nose picking (because someone told us to). I think if any of us were taught to avoid nose picking because we got a jolt every time we did it, we’d probably develop very odd perceptions about the people around us.
If the ultimate goal in the treatment and education of people with autism is to socialize them as appropriately as possible, they need to see us as people safe to be with and worth the considerable risk to themselves to ’socialize’ with. Being power grabbing hurt-producers will not demonstrate a different set of behaviors that will be attractive to people with autism.
How is shocking a slapper better? If we quibble with killing a murderer, and seek to legislate spanking, we should carry the arguments forward to determine how we want to assist the mentally broken or fragile.
For an accurate summary of what the Judge Rotenberg Center is really about, please go to http://www.judgerc.org/responsetoblogs.pdf
I am currently a mental health assistant at The Judge Rotenberg Center and until you have seen some of the things I have seen in my two years here, you have no room to judge. Some students who come into this program are inches from death due to their self destructive behaviors, such as severe head banging, biting themselves, even rectal gouging. Some days i’ve gone home in tears. These kids have serious metal issues and with the help of the two second skin shock we use, I have seen children who were extremely suicidal completely turn around, even become independent in some aspects of life. Such as learning to feed or clean themselves. I strongly feel without the use of the aversives we have at this school many of these people would no longer be alive.
I have a 15 year old son who has been at JRC for 2 1/2 years. He has PDD. The school district’s and Psychiatrists answer to his extremely violent behavior was to keep him drugged and put him in an institution at 12 years old. They agreed to try JRC as an alternative. When admitted to JRC, he was functioning at a 2nd grade academic level due to being so spaced out he couldn’t learn. They weaned him off the psychotropic drugs, changed his diet, and made a personal rewards system that has made a real difference. (And by the way Kassiane, they do teach there. My son is now working at 8-12th grade level, and is taking his first regents this month). He would have not been able to do any of this without JRC. He would be drugged and warehoused like so many other “problem” children are. No one seems to care that these drugs have never been tested on or approved for use in children. Do we even know what permanent damage is being done to them? These drugs have injured and killed many thousands of children with their side effects. How come no one seems to care about this? How come no one is bringing up criminal charges against doctors prescribing these dangerous drugs off-label to children? Is this medical experiment ok? Kinda reminds me of the Nazi Concentration Camps. Is it because the drug companies are too powerful, or maybe they have the general public so brainwashed into thinking these drugs are good? People would rather pop a pill than make healthy life changes. This really sickens me. So, lets go after JRC instead, it will be much easier.
As Martin Luther King Jr. said: “Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity.” This is a prime example of that. No treatment is perfect, but to take away the only alternative of essentially “giving up” on any hope of their childs future is pure IGNORANCE.
Shock treatment, and other aversives, are products of behaviorism. Behaviorism is promoted by ABA International which is the primary supporting agency of Skinnerian psychology. However, they have deviated from Dr. B.F. Skinner’s teaching regarding negative interventions. Skinner, especially later in his life when he was at his wisest, specifically condemned the very same practices as what the JRC engages in. Those who read these words, and who believe that ABA is an acceptable treatment for Autism, may want to consider that the main organization behind ABA supports aversive treatments, including skin-shocks.
All research and experimentation in this area has been conducted by behavioral psychologists. Dr. Lovaas, who during his early research at UCLA used an electric floor to experimentally shock the feet of human guinea pigs, may be considered the father of ABA as we know it today. But even Lovaas concluded that this type of “treatment” offered no long term benefit.
What we have here is essentially oppression. When people with power apply tactics of fear and pain, then the result will almost always be submission. There is no scientific research needed to confirm this. History has revealed this numerous times. So, if the group that has power wants to declare this as “effective treatment,” then they can most certainly produce charts or pictures that would seem to confirm that their methods work.
What is never truly seen is the heart of the person being oppressed. These particular individuals are already those who are constantly overwhelmed by sensory overload, and with this methodology there is never even a consideration of the underlying issues the child or young adult is attempting to cope with. Instead, an archaic “cave man” method is applied, utilizing a modern electronic instrument instead of a wooden club, to force another person to comply through fear and pain.
It is sad that only those who offer worst practices have organized themselves in a manner that makes their services readily available to provide a so-called education. The intelligent and best alternatives, which admittedly require more time and patience due to the simple fact that they are not oppression based, seem to be nearly impossible for these parents to find. Regardless, lasting solutions do not come through the simplistic cave man approach of applying greater force and pain until submission is achieved. Solutions materialize through examining and understanding the causes and motivations for the behaviors and adjusting environments to conform with the needs of the child while providing an education that teaches alternative coping methods that are preferable to the child and their caregivers.
Unfortunately, it seems that school districts are more willing to spend large sums of money for oppressive “treatment” than to demand best practices that are humane and probably not any more costly than the technologically enhanced cave man approach.
If we believe in “best practices” then let’s get busy and organize! This nightmare will not go away just by protesting against JRC practices. The picture we need to see is much larger. Appropriate services and a system that identifies such services is needed right now!
I am Crystal’s mother and the article in the NY Times is about our family which she is part of.
I was 32 years old when I had Crystal. Her siblings were 14 and 7. Her birth was a welcome addition to our family as well as a surprise but again we felt blessed.
When we were told that she had a heart condition as well as other ailments we were distraught beyond belief but we forged on and took her to many doctors including specialist.
The ridiculous tests they put this child through at government expense was unreal. I have always been a disciplinearian of sorts so I raised my kids to behave within reason at all times. By the time Crystal was first placed in school (age 3) she did well. By age 5 she stated to show signs of a severe educational disability.
She stayed in a kindergarten setting for 4 years to try to help her.
As she got older her behavior started to get become hard to handle for others. (IE) her teachers. I started getting phone calls from school regularly to come get her.
We placed her in a SIE 7 because she became unmanageable and there she learned every rotten behavior she would see while watching her peers throw furniture, kick walls and doors and fight. She also saw them get their way beause they were bribed by the staff with sodas to be good and get on the bus and go home and be their parents problem.
By the time Crystal was 14 she was on 7 medications and in her first residential placement. After 2 years I took her out because it was a waste of money. She made NO progress. The Board of Education was not happy that I took her out without “their approval” but I had put in the request forms and waited 6 months with no assistance. To teach me a lesson they decided not to help me find her a local school so after 6 months I went to Impartial Hearing and won. They found Crystal a placement but it was inappropriate. Most of the children were in wheelchairs. Crystal is a child who is ambulatory so she needed constant supervision. Needless to say the school started calling and writing letters of complaint to me. As a result they started a campaign to get me to remove Crystal from the school.
Long story short one day I got a call from the school telling me that Crystal was in the ER. When I got there they informed me that she “GOT OUT OF CONTROL and was considered a DANGER TO HERSELF AND OTHERS so they called 911. After 4 hours in ER they discharged her with an additional 3 prescriptions and a clearance letter to return to school. Needless to say the school was not happy and as a result two days later I got another call. Crystal was in ER again. This time it seems it was time to let someone else use the computer but Crystal didn’t want to get up. By the time they finished getting her up she became so angry that she picked up a chair and threw it. They called 911 and six cops came in and handcuffed my child and put her in the ambulance.
When I arrived at the hospital I was told after 4 hours that they were keeping her.
The unit they held her in was an adult psych ER. My daughter was 16 at the time.Also mentally retarded. They assured me she would be safe as a 1-1.
At the time I worked and attended college full time at night. The next night after finishing my classes I got a call at 10:30 to come to the hospital. When I got there I found my daughter laying in the ER with her face bruised up and blood coming from her ear with choke marks around her neck.
I was told that a male patient the same age as me had attacked her because she said hi. If security hadn’t seem him through the window he would have killed her.
The hospital protected him from the Police for a month. By that time he was medically stablized and when he got to court they made him promise to take his mdication and be good and they let him off with probation.
When Crystal was released to me two weeks later they armed me with 5 more prescriptions for her to take. That brought the total to 15.
Then I had to fight again to find her a school. After a few weeks they found Crystal another school with a 1-1 para and a bus para. Sometimes the bus para would be late so I had to take Crystal by public transportation or walk 35 blocks to get her to school because the driver wouldn’t take her without the para. Two days before the Christmas break I sent Crystal to the school and got a phone call around 10:30 that I needed to bring her a change of clothes. I brought her the clothes and when I got there they told me I had to take her home because she was sleeping in class. With all the meds in her system I wonder why???????
The next day I sent Crystal to school but she had gotten angry with me before the bus came and threw all her socks out the back window. I put her on the bus and a few minutes later I got a call from the school to come to the building. When I got there I was informed that I needed to bring Crystal home because her para had brought her baby to school for the Christmas party. They had not expected me to send her that day. When I refused they were visably upset. Later on when Crystal came off the bus there was a ACS worker behind her. The school had filed a complaint because Crystal had come to school with NO SOCKS.
By the time the worker left he determined that the SCHOOL was failing Crystal. He also left me a crisis number to use in case of emergency.
Needless to say 4 days later she was admitted to a psych. unit for children. She stayed there 4 months until JRC came to my home at my request to speak with me. They went to visit Crystal and determined that they would accept the Board of Education’s recommendation to accept Crystal.
It was hurtful to put her in another residential but I was confident that the school could help her.
They were very forthcoming with the aversive therapy information and made it very clear that we are a team dedicated to helping my daughter. By the time she got to JRC from the hospital she came from they were trying to add a diabetes medication to the list. In addition she weighed 175lbs. I asked them to get her off the meds and help her lose 40lbs because she was extremely overweight.
There was never a time when I was not informed about my daughter’s tenure at the school.
In conclusion let me say the following:
1- JRC has helped my daughter and my family.
2- They did not force me to put her on aversives.
3- The school is not for everyone.
4- If you are not happy with the school remove your child but don’t make trouble for other parents by hiring Ken Mollins because he doesn’t care about your child anymore than OMH, OMRDD and all the full of crap politicians as well as NYS Dept. of Education and NYC DOE.
The DOE has been sending kids to JRC for many more years than my daughter has been there but now that money is tight our kids and families have been put in the spotlight.
The reason why these kids are there is because the system didn’t know what else to do. If they had an effective plan we wouldn’t be wasting our time with this issue.
5- Why isn’t somebody bitching about the ADULT who made the phone call in August to authorize the hoax??????????
(you don’t really think it was a former student do you??????)
6- Anyone who thinks they can do a better job should step up and put their money where their mouth is.
IT’S WHAT I HAVE BEEN DOING FOR ALMOST 21 YEARS.
Personally I don’t care what people think beause Crystal is my child and not yours. But I take offense to all the comments I have been reading from people who are blessed enough not to have a child like mine.
Even if you don’t agree with our methods it doesn’t give anyone the right to say some of the things that have been said about us. I have raised 5 children and I have 7 grandchildren. I do extensive volunteer work for children and families and I am respected by my peers as an intelligent woman.
There are families in crisis all over this country and the least we can do as a society is find a way to help instead of helping government destroy the family unit as a whole.
Think about it.
I understand that Dr. Israel has issued the call to parents and employees to comment here. This has happened frequently.
I am the father of a son with Autism, and the brother of a sister who has been institutionalized since she was 9 y.o. (she is now 51). I am also a person with Asperger’s Syndrome. I can assure you that I have a considerable understanding of Autism from multiple perspectives.
If anyone has any doubts regarding JRC, please google Linda Cornelison, Vincent Milletich, and Danny Aswad. The former nameof JRC was Behavioral Research Institute, and it existed in both California and Rhode Island. What you will read will seem like a horror story, but it is the truth. It will reveal to you only a few small slices of historic information regarding Dr. Israel and his work. In its current state there is more modern technology, and some precautionary standards which have been forced upon the facility. The mindset of the director does not seem to have changed.
The methods employed are torturous and degrading. The educational benefit consists of propping students, many of which do not comprehend what they are doing, in front of computer monitors for 6 or 7 hours per day, 7 days per week. They press various parts of the monitor to answer multiple choice questions. Some of the students who do not understand what they are doing, will just randomly press the screen even if the computer has froze up due to a problem. If they do not comply, they may receive shocks.
As far as vocational training goes, they provide lower functioning adults the opportunity to put rubber bands around a small bundle of popsicle sticks over and over and over and over again, every day, every week, every month, every year. There is no validation of a person’s life.
This is the most hopeless of settings that any person reading this can even possibly imagine. The Jennifer Gonnerman article offers you the truth of the modern JRC. The Ric Kahn Article, “Dr. Hurt” reveals the early history of this house of horrors.
The truth is out there. You only need to look (Google).
I have a tremendous amount of understanding for the parents. However, it is not ok for Dr. Israel to utilize them for his own benefit. If there is one thing that he truly learned from Dr. Skinner it seems as though he did learn how to manipulate environments, including people, to accomplish a certain purpose.
If only…
…Though you will not.
To observe & feel is too still not bare in our bodies & soul
Special people… so unique & irreplaceable.
To see this discussion evoke so much emotion out of everyone with a single common cause: provide proper care for those in need. I do not have the tools, knowledge or funds to do so in masses or for all but BELIEVE I do so for those I care for.
Take your politics & price tags and flush them down the toilet where they belong! LOVE