Tuesday, November 14, 2006

A very outspoken advocate

Kit Weintraub is an important and respected autism advocate. Her work has gained the approval of the Association for Science in Autism Treatment (ASAT), and of the leaders of Canada's autism community. I've been alerted to some letters she made public earlier this year. These letters appear on the "JRC Parents/Friends" blog. This is a blog run by the Judge Rotenberg Center and featuring testimonials supporting the work of the JRC. For information about how the JRC treats its "students", many of whom are autistic, see this report. Ms Weintraub's letters mostly speak for themselves.

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Comments submitted to JRC from the mother of two autistic children

-----Original Message-----
From: website@judgerc.org [mailto:website@judgerc.org]
Sent: Wednesday, March 29, 2006 6:40 AM
To: Burt, Sarah
Subject: Comments Submitted by Kit Weintraub

Comments: Dear Judge Rotenberg Center, Just wanted to say that I saw Dr. Israel on CNN with Anderson Copper and Bennett Leventhal. I was so impressed by Dr. Israel. I have two kids with autism, one, a girl, twelve, who is extremely self-injurious. We have run a very high quality ABA program for her for years, but could never get rid of the self-injurious behaviors. Only on risperdal are they reduced, and we have seen her gain close to 100 lbs on the medication. We have had all sorts of behavioral experts come in and try to extinguish the behavior with positive behavioral interventions, unfortunately, they did not work. No one wants to try electric shock with their child, it is a last resort, but I would do it in a heartbeat if I could get my precious child to stop hurting herself. Is the risperdal less abusive? Weight gain, tardive dyskinesia, disabetes, Dr. Leventhal has no answers. I am sorry you had to be subjected to his condemnation, but you carried yourself with grace and dignity. Thank you. Kit Weintraub, mother to Emily Weintraub PS I had to check admission in order to send this, unfortunately, in Wisconsin, there is no way our district would pay for the school. I am checking admission in order to send the email, this is really just a comment. PS, I sent a similar comment to Anderson Cooper.


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-----Original Message-----
From: Kit Weintraub
Sent: Wednesday, March 29, 2006 7:48 PM
To: Israel, Matthew
Subject: Re: Comments Submitted by Kit Weintraub

Thanks, Dr. Israel. You are welcome to use my comments on your blog. I have been a very outspoken advocate for behavioral treatments that raise the quality of life for our children. It is not easy to stand up for the truth, and the truth is, for some kids, aversives are all that keep them from killing themselves or others. No one should be judged or condemned for earnestly trying to extinguish dangerous behaviors in children who cannot be taught by any other means. It never fails to amaze me that people don't get the difference between beating a child and using an aversive under controlled circumstances in the presence of extreme behavior that has not responded to anything. Leventhal was lying. There are kids for whom nothing besides aversive behavioral interventions works short of drugging them into a stupor. Good God, what parent wants to be in the position, or what clinician, for that matter, of choosing electric shock or watching their child put their eye out? Bottom line is, I guess most people would rather see the kid put their eye out, and just wring their hands and shrug their shoulders. I guess I am preaching to the choir. I have been lambasted, too, for supporting aversives in extreme last-resort circumstances too, so I guess I can somewhat relate to what you and your staff must be going through. It is hard. No one likes being called a child abuser.

Thanks for all that you do.

Kit Weintraub
mother to Emily and Nicholas Weintraub

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As I wrote earlier, the JRC isn't widely admired by behaviour analysts, and I've assumed it isn't admired by autism advocates in Canada and elsewhere. I would never dispute Ms Weintraub's claim that she is a "very outspoken advocate", and she clearly has many important supporters, among whom ASAT and Canada's leading autism advocates are prominent. For this reason, among many others, it's important to know what exactly Ms Weintraub is advocating for, and what some of the consequences of this kind of advocacy are, for autistic children and adults.

15 comments:

mcewen said...

Thanks for adding to my daily guilt quotient and for helping me recognise my status as a hand wringer. Today I will dither over the issue of status.
Best wishes

Joseph said...

I didn't know Kit Weintraub was sympathetic to the JRC, but that's really not surprising at all. I got the impression from the article she wrote attacking you that her kids were "recovered" with only quirks or something. Oh well.

notmercury said...

So for Kit the choices seem to be:
a) Risperdal
b) SIB
c) Electroshock

Given these choices, who wouldn't opt for the lesser of three evils? I didn't realize it could be so black and white.

leila said...

Call me naive, but I had no idea that electroshock was still being used in the United States in the 21st Century. This whole story is so apalling, I wish I had the means to rescue all the people from that clinic.

ballastexistenz said...

It's not electroshock, it's skin shock. Difference in where the shock is applied. (Electroshock does, though, still exist. They now sedate people to keep them from physically damaging themselves, and consider it wonderfully improved, but the brain damage is still there.)

Kristina Chew said...

Those are not the only choices, or need not be----this is sad.

Matthew Israel said...

For more interesting letters from JRC parents whose children have benefited from the availability of powerful positive programming supplemented by very occasional skin-shock aversives, see http://www.judgerc.org/parentletters.html.

For a response to the false accusations in the New York State Education Department's report on JRC see http://www.judgerc.org/faqs2.html#negativereport.

The truth is that programs that use positive-only treatment procedures reject or expel difficult-to-treat students and these student are often then referred to JRC where they are treated successfully. For proof see http://www.judgerc.org/posonlyprograms.html.

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

Gatt Suru said...

Yes, leila, electric shocks are still used. Conventional electroshock therapy is often used for dealing with significant depression that doesn't react well to medication and psychotherapy. It's actually fairly effective, though there are arguments as to the ethics of inducing a seizure like this does.

Electrical shock aversives Individuals undergoing this much provide informed consent, and be given an anesthetic and paralytic agent. Using it electrical shock aversives on children (and even adults) is illegal in many states, and of very dubious ethical value, but there are no doubts that a certain facility in Canton, MA has been applying it - they proudly parade the GED's effects.

Ironically, Kerry had significant problems with too much air conditioning in Iraq, but doesn't mind electrical power going through a kid's leg at his home state.

So, Mr. Israel, the truth is that the JRC is usually picked after other schools have expelled (often multiple schools) and 'treats' them through aversive therapy? I'm not sure you really want to be waving around the credentials of being the last choice and zapping kids, to be honest.

I understand that your group has a 0 expulsion rate, and that you can't choose your students. But zapping children 'til they end up with "small red inflammation" (if you'd prefer that phrase over the typically normal "first/second degree electrical burns") is an ethically problematic choice. There are known treatments for preventing self-injury that do not focus on psychoactive medication, restraint, or electrical shock, as anyone in the field today knows. From my reading of Ms. Bryna Siegel's books, self-injury suggests either extreme frustration or sensory issues, neither of which seem to be best fixed with two seconds of electrical power.

In particular, I'm a little concerned about allegations that your group has increased both the duration and intensity (voltage/amperage) over the base FDA-tested values for these electric shock devices. It's been known for decades that the act of punishment is as important, if not more so, than the degree of punishment. Even more notably, at least according to the 1991 Rutger's experiment, it's been known that clinicians show higher job satisfaction after the use of aversives including electrical shock, and it's not clear you've got a system in place for preventing sadistic individuals from using the button at will regardless of your plan. Given the allegations of a child being zapped multiple times for asking for tissues after a sneeze, I think the treatment plan suggestion may be suspicious. Unless, that is, this magical probate court stares over the shoulder of every clinician available at your facility.

I'm plain disgusted by the dietary regulations, which if the allegations are true are little more than starvation diets, and the reports of electrical shocks used simply to deal with behavioral issues rather than actions likely to hurt the target or others, and that children were forced to keep the devices on when in showers (an obvious electrical hazard).

And your FAQs are just plain misleading : we don't use electrical shocks or unproven injections on PoWs because it's ethically problematic and medically dangerous, and due to the Geneva Accords, we recognize that official soldiers must be given a measure of respect and safety once they surrender. The same applies to children as well.

I'm equally sure that you can find people willing to provide testimonials - and for free. I should know, I've seen people give testimonials in favor of placebo treatments for individuals with Crohn's Disease, and the parents of those 'treated' for homosexual deviancy proudly write to their gratitude.

I'll note that the latter two options are considered very un-PC right now.

Michelle Dawson said...

Catching up. Joseph, no I didn't know either. This was news to me.

For NM, our Canadian autism advocates claim that ABA programs are effective for all autistics, and that the "choice" for autistics is ABA or institutions. There are a few variations on this theme, e.g., ABA or being tied to a chair and lobotomized by drugs. But the theme is ABA or catastrophe--because autism is seen as catastrophic, and as just naturally requiring us to be drugged into a stupor, restrained, and/or locked in institutions.

But Ms Weintraub claims to have access to the best ABA programs there are, and this has somehow failed, even by the standards of those programs. One question that isn't clearly answered anywhere is, what happens to kids who fail in optimal ABA programs (which is a lot of kids), by the standards of those programs , when their parents and everyone else strongly believe that ABA is the only "effective" autism treatment?

Another is, to what extent are anti-psyhotics used as adjunct to or part of ABA programs? Susan Hyman, presenting at McGill in 2005, considered risperidone to be an important if not integral part of ABA programs. But there is no published ABA controlled trial that in any way accounts for medication.

Leila wrote: "I wish I had the means to rescue all the people from that clinic". Yes, so do I.

Michelle Dawson said...

For Dr Israel, as Smith (1988) wrote, Bettelheim had glowing testimonials from parents and a long waiting list.

Every marketed autism treatment, many of which are harmful and dangerous, has devoted testimonial-writing advocates who are certain that without this particular treatment, autistic people are doomed.

The JRC epitomizes the practice of setting aside autistics, and other disabled people, from the standards of science and ethics that serve to benefit and protect anyone else. This is a way of setting aside certain people from the rest of humanity and making us less than human.

When autistics argue that we deserve the same standards that protect and benefit everyone else, we are then told that these standards are bad for us, because we are different, we are not human like everyone else, we are less than that.

I don't think the "choice" for autistics is between ABA programs that adopt low or no standards of ethics (as I've written elsewhere), and that are founded on a body of science of great quantity and very poor quality--and the JRC.

Autistics are always being told that we're doomed unless the bar is lowered, unless the standards are thrown out, unless we can be treated in ways that would never be acceptable for anyone else. I disagree with you, Dr Israel, and always will.

Anonymous said...

So doctors
Gave vaccinations
And I trusted schools
With education
And Regional Centers
Offered behavioral rehabilitation
And the more the professionals
Came and went, the more the days darkened
And nights broke apart and
I witnessed the social apathy
That twisted my mind
And angered my heart.
Such dispassion!
Didn’t they care about life?
Or desire healing
Or feel urgency to
Stop the senseless beatings?
Fed up with the army of useless professionals who kept offering the same tired ineffective interventions, I fought like hell for a medically prescribed skin shock and finally my son was released from his self-punching prison! He could get dental care. He could learn. He could go out with us to dinner. No longer were we help captive to a behavior that destroyed our lives for years and left our son with multiple contusions, lacerations and tears. Then we faded skin shock. Why? Because after seven years his behaivor had radically decreased. Schools and Regional Centers then promised to flood our son with a host of positive behavioral interventions--the same ones that had failed before. Then his behavior slowly returned. He regressed. I fought the urge to go back to skin shock. I told myself, surely, we only used it as an emergency intervention and we must now move on. There are better ways, just as people like Michelle Dawson obsessively allege. Well they are naive. They haven't witnessed or lived with children smashing their skulls into the concrete over and over and over again--despite parents and professionals offering days, months and years of comprehensive, overlapping best of the best positive behavioral interventions, special diets, helmets, arm splints, medications, holding, hugging, warm baths, aromatherapy, music therapy, art therapy...yea, yea. we've done it sister. And it's ALL repeatedly FAILED. NOTHING but skin shock ever worked for our son and how dare you ignorant fools judge people who have lived this hell. How dare you presume to know what is best for our children while you sit their typing in your quiet zones and you haven't been under mindless years of chaos, seige and oppression. SKIN SHOCK THERAPY IS NOT AVERSIVE THERAPY. IT IS NOT ELECTRIC SHOCK. GROW UP. It is a unique therapy for unique children. In the name of God, quit tormenting people who are trying to help their children escape being bludgeoned by their own hands! Look, the hard truth is you sick, naive anti-aversive zealots are pathetic. You are not helping autistic children. You are selfish, narrow minded people.

Ettina said...

"So for Kit the choices seem to be:
a) Risperdal
b) SIB
c) Electroshock

Given these choices, who wouldn't opt for the lesser of three evils? I didn't realize it could be so black and white."

Even if it were limited to those three, I wouldn't choose electroshock. I'd choose SIB if it was to the degree most of the self-injurious kids I've known had it, and medication if I thought they were risking serious injury or death. Hitting your head with an open hand or hitting your mouth and biting your hand gently, what one girl I knew did, was something I was willing to ignore in order to focus on helping her calm down. Which brings me to the next point, that there are other options. My favorite is to address the causes, reduce stress and gradually work on helping the child find better outlets for stress.
I work with autistic children. I've known probably a few hundred autistics, none of whom self-injured in a way I couldn't deal with by the method described above. Self-injury at all is quite rare, despite being mentioned so often as a characteristic of autism. Maybe there are some autistics I couldn't help that way, but they are quite rare (the likes of Jeff Apple in Spinning Straw). I'm firmly of the opinion that a gentle, empathetic method is the best. ABA doesn't work well on self-injury, because it lacks empathy.

Anonymous said...

OMG just saw this post. I am shocked (no pun intended) that people still understand the most severe sides of autism, which include, treatment resistant self-injurious behaviors that continually cause damage to the autistic person. The fact someone would have the audacity to infer that a person doesn't have the right to be free of self-harm, with an episodic skin shock device carefully and judiciously used in a behavioral program, has got to be either completely ignorant or just sadistic. No sane person who has witnessed autistic persons with self injurious behavior suffer for years and years, despite tons of treatments, would dare suggest you just try a "mild" approach. That statement alone suggests the person is living in a fantasy world, where no autistic person will ever need a skin shock therapy. Wake up honey, there are sides of life you don't have a clue exist. Severe autism and self-injury are among the most devastating combinations, due to language difficulties and obsessive compulsive habits that evolve into full blown disorders. Skin shock I might add, should be used temporarily, while the person is still trying to find the ever elusive, magical medication combination, which if you know anything about the world of severe autism, often takes years of playing with meds, before you find that combination. Meanwhile, notmercury and others will have us believe it's just peachy okay to let the person pummel themselves, poke out eyeballs, smash teeth from their mouths, pull chuncks of hair out or slam heads into pavement causing concussions, oh, yep, that sounds like a fabulous alternative to skin shock.

Michelle Dawson said...

See Guardian piece here.

For fair test (small multi-site RCT) of non-ABA, non-aversive treatments for "aggressive challenging behaviors" in developmentally disabled adults, see Tyrer et al. (2008).

See also this for a personal view including the comments. See the last comment, e.g.

Anonymous said...

I suggest you read the story on a blog titled, “Controversial Adjunctive Therapy for Autism and Self-Injurious Behavior: Part Seven” it’s at autismseizureselfinjuriousbehavior.com. The autistic child in this story once used skin shock, and it stopped the self-injurious behavior. When the skin shock was stopped, because state officials wouldn’t use it in his group home setting, he eventually suffered a hematoma to ear, which required two surgeries to repair, and now he’s back home with family and their trying hard to get him back to where he isn’t hitting himself again. I don’t think they’re using skin shock now, however, as he’s too old now perhaps? Not sure. The blog article cites Kitty Dukakis and ECT therapy.