Tuesday, December 25, 2007

Autism and Rotenberg's Unanswered Questions

In Parents Defend School’s Use of Shock Therapy the New York Times has revisited the Judge Rotenberg Education Center's use of aversive therapies, particularly the "shock" therapy, a mild two second bee sting style of shock, used in treating children with severe aggressive, self injurious even self mutilating behavior arising from autism and other disorders. Many scientists, therapists, politicians, bureaucrats and internet bloggers have condemned the Rotenberg center's use of aversives. But The New York Times goes beyond the Mother Jones breathless expose approach to these issues and presents the perspective of Susan Handon and other parents whose children have benefited from aversive therapy and who have even obtained a court order so they could continue to send their children to the Rotenberg Center for treatment.

Why are parents fighting to keep their children in a center which subjects them to a form of shock treatment? The NYT describes some of the reasons children are being treated at the JREC:

"Rotenberg is full of children who will run up and hit strangers in the face, or worse. Many have severe types of dysfunction, including self-mutilation, head banging, eye gouging and biting, that can result from autism or mental retardation. Parents tend to be referred there by desperate education officials, after other institutions have decided they cannot keep the child."

The Rotenberg's effective use of aversive therapy in addressing such serious issues poses a challenge to the world to provide an effective alternative treatment. The parents who send their children there can not be easily dismissed as Ms Handon has shown. Insults and political correctness will not address these issues.

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?

18 comments:

Gary McGath said...

"Political correctness"? Are you implying that shock therapy is merely an unorthodox point of view, and that opposition to it is suppressing a mere difference of opinion?

The Rotenberg Center describes the shocks as "bee stings"; fortunately I haven't had to test it myself, but I've seen one independent account which strongly disputes it. In any case, an institution which administers even "bee stings" as casually as Rotenberg does -- 77 of them to one person, on the basis of an unverified phone call!!! -- can't be dismissed as merely a healthy difference of opinion. They are free to say as much as they want that torture is a "treatment"; what they should not be free to do is to administer it.

Autism Reality NB said...

Mr McGath

Thank you for your comment and thank you for using a name.

There is a real difference of opinion between you and the parents who have, out of desperation sent their children for treatment at the Rotenberg Center and who swear by its results; results which have helped to prevent aggression and serious self injurious behavior, including self mutilation.

You have not been exposed to the "bee sting" shock as it has been described by people who administer the aversive, one which has been used with the consent of caring parents one of whom is a medical doctor who posted a comment to this forum testifying to the benefits of this treatment for her child.

My initial response on hearing of the use of aversives at the Rotenberg was much like the response in your comment. But I read Dr Israel's statement and read the testimonials of caring parents and now I approach it with an open mind.

You have suggested no alternative. These children are at the Rotenberg because other alternatives failed. The existing alternatives are to stupify them with drugs or permanently isolate or restrain them.

Do you suggest it is better to let these children continue to harm and even mutilate themselves or use a 2 second bee sting style skin shock once a week? When you attack the solution without offering a real alternative then yes you are providing a politically correct response but one that is of no help to these children.

As for the phone call incident it is my understanding that that abuse of the system by someone unknown has been addressed at the Center. That is not relevant though to the issue of the treatment itself. Nor is the apparent abuse in one instant of 77 applications. No more so than any other misused treatment.

What is your solution Mr. McGath?

Anonymous said...

If you believe so firmly in JRC, why haven't you sent your son there?

Robert

Anonymous said...

Have you read any of the first-hand accounts of staff who worked there or students who went there? (As opposed to parents who sent there kids there as a last resort?)

I'm not convinced it needs to be closed. In my years working in human services I have met 1 child I thought would benefit from the program. One. Of the hundreds of severely disabled and autistic children I have met. It is a last resort. I remain conflicted about its existence, but I refuse to portray it in a positive light. It is what it is.

Autism Reality NB said...

Robert

We work with my son with positive reinforcement. He is not gouging his eyes. Although he still bites his hands it is much less than before and he has improved. There is still aggression towards others. But we assess it day by day in terms of what we can and can't do.

What we do with our son is rooted in reality not internet rhetoric.

Autism Reality NB said...

Anonymous, I didn't portray it in a "positive" light. I simply stated that it has helped some children who were hurting themselves or others. That is what it is.

I am not suggesting that the idea of inflicting even a mild 2 second skin shock should be undertaken lightly. But when the choice is between using a program which utilizes that level of aversive intervention versus allowing a child to continue to injure or even maim himself or herself I have no conflict.

Given your acknowledgement that there is at least one instance where you met a child who you thought would benefit from the program then you have in fact portrayed it in a positive light in that instance; an instance of last resort. A principle with which I agree.

Removing the option of helping a child for whom the aversive is a last resort, for whom self mutilation is the alternative, would be a false and erroneous moral judgment.

KateGladstone said...

The electric-shock policies at Massachusetts' Rotenberg Center will get really interesting if that state passes a bill now before its legislature: House Bill 3922, which would forbid parents to spank their children.

Since the Rotenberg Center notoriously permits parents of students to borrow shockers for use when the children have earned a visit home, we may soon see an unprecedented legal and moral conundrum: a state which allows a school to encourage parents to electrocute, as long as they remember the law and do not spank

Foresam said...

Harold,
I hope you're having a nice Cnristmas.

I think we should start zapping the neuroinsane bloggers for every idiotic complaint they come up with that does not propose a better solution.

Anonymous said...

Ok, since Mr. Best wouldn't allow my response I post here on your blog.

You asked what alternative or solution concerning the use of GED for students that gouge their eyes out would I suggest.

My answer was that I don't have a good answer for that.

Now, please answer my questions. Is it all right for the GED to be used when a student tells a teacher that they stink or they curse. Is it appropriate to wake a student in the middle of the night and administer the GED 77 times and sending them to the hospital with 1st degree burns, without regard to whether the call to the students house was a prank or not.

I'm sure your a reasonable person and will answer reasonably like I did.

The overwhelming majority of students at JRC are not stabbing their eyes out. If you notice, the footage that JRC shows to demonstrate students like that is all shot on 8mm tape. When was the last time someone used 8mm tape?

Robert

Beau McClelland said...

Hello,

I'm quite sure I've read your blog before. But I've never commented on an entry until now.

You do your entries very well. They're well-researched and well-written, and for the record, this is from an autistic person's point of view.

I normally agree with a lot of what you have to say. However, I must respectfully disagree with you on this.

ANY parent who even thinks about sending their kid there deserves to be arrested for child abuse. And possibly have their sanity questioned as well.

Anonymous said...

It is sad that parents feel they are left with the choice between the JRC and drugs for their children...

NY State found that not only does JRC shock, it also withholds food, provides little education, and has a substandard staff in both educatioon and training. Worst of all, it can provid no statistical evidence that there is a better expected outcome than with other insitutions or drugs when its students transitioning out to adulthood.

Yes, they will take any child - every animal responses to pain. But these are our children. And even if the individual child may be better off, it is at the expense of our humanity.

Autism Reality NB said...

Anonymous 1:25 pm

Still you provide no alternative solution. Not one single critic of the Rotenberg Center that I have read has supplied a viable alternative solution to the use of the 2 second skin shock aversive therapy used at the JREC.

The parents who have gone public with their names to support the JREC have testified of the need for the JREC aversive program. Can it be improved? Probably. Can it be replaced with something better? Please provide the better alternative ... if you can.

The parents of the children at the JREC don't have the luxury of debating what this mild aversive does to our collective humanity. They are protecting their children from grievous self injury.

Anonymous said...

Not all proplems with care and treatment of Autism will have solutions during our lifetime.

It is wrong to throw away $225,000 per student year at an institution that dehumanizes both us and our children and cannot show after 30+ years (JRC and BRI) that it provides a better anticipated outcome than other treatments.

Our autistic children are a gift. Their pain is our pain. Their joy is our joy. Unless their condition teaches us to understand our own humanity, it is all for naught.

Matthew L. Israel said...

For an accurate summary of what the Judge Rotenberg Center is really about, please go to http://www.judgerc.org/responsetoblogs.pdf

Autism Reality NB said...

Dr Israel

The link you provided does not appear to work.

KateGladstone said...

To Dr. Israel:

The material at http://www.judgerc.org/responsetoblogs.pdf leaves several questions unanswered.

/1/ Why does material written by staff of the Judge Rotenberg Center always refer to the shocks as "skin shock?" Do you do this to differentiate the shocks from shocks delivered to some other part of the body? (After all, where else could one person shock another person: on the hair? On the fingernails?)

/2/ How does the Judge Rotenberg Center adjust students' records and/or treatment plans after learning that shocks have inadvertently gone to students who behaved well instead of badly? Examples here include the students recently shocked 77 and 29 times — respectively — when staff accepted as valid an ex-student's hoaxed orders to shock these students (for things that these students had not actuallly done). Other examples include the times that staffers have selected the wrong remote control and therefore have shocked a student other than the intended student — as well as the cases in which shock equipment malfunctions and shocks a student randomly throughout the day or week until someone finally detects the error and eventually fixes that student's device. What, if anything, does the Judge Rotenberg Center do to prevent or undo the bad effects (on a student) of receiving shocks at random intervals (or othrwise unconnected with the student's actual behaviors)?

/3/ Former students and employees of the Judge Rotenberg Center have mentioned an aversive technique called "probing" (reportedly applied privately by a Judge Rotenberg Center staffer) which the web-site of the Judge Rotenberg Center does not mention or describe. What does "probing" consist of,? What equipment does it use, and how does it use that equipment? At the Judge Rotenberg Center, where, when, and why would a "probing" typically take place?

Anonymous said...

Special education for severely disabled children should be terminated. Not because the kids don’t require an education, but because they aren’t getting one. In fact, the entire special education system is a sham. Let me explain. First teacher burnout and attrition are rampant in special education. Can the burned out lead the blind? Naturally, teachers cite clogged caseloads, behavioral issues, paperwork and pushy parents as prime reasons for leaving the job. But quitting says more about quirky personalities holding special education credentials than occupational burdens. A quick solution: Administer personality tests before sending teachers into classrooms. Frankly, I prefer obsessive-compulsive teachers. They get things done.

Marcus said...

This video shows there´s no cruelty. It´s a treatment.

http://br.youtube.com/watch?v=4trgwdo4hIg