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Living with Autism


April 9, 2011

When All Else Fails

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Years ago, we considered skin shock therapy for our autistic son. A doctor prescribed it.

At some point, I mentally ran through the reasons parents like me would result to skin shock therapy.

From what I learned, parents were desperate and wanted to save their children from a complex savage behavior that has stumped and baffled experts for over 40 years.

I have never understood the vicious attacks on Judge Rotenburg Center (JRC). What the public doesn't hear is that BEFORE arriving to JRC, many students are near death, the result of being subjected to tortuous years of ineffective behavioral and drug therapies by professionals who later gave up and left them to die.  

Look, I have seen several before and after skin shock videos, which, I might add, rivaled a West Craven horror flick. JRC seemed to be taking the autistic client that other had THROWN AWAY and GIVEN UP on. I'm not agreeing with everything that went on there, but holy moly, at least they were trying. Matthew Israel was a behavior psychologist, for pete's sakes, he was doing the best he could with a population other professionals had tossed off. And that governmental agencies had ignored, downplayed and wanted doped up on antipyschotics. Let's be REAL here folks. That's the TRUTH.  Instead of judging Judge Rottenburg Center, people should've done the friggin jobs to begin with so no parent had to consider skin shock.

In one home video, a young girl with autism screamed and bashed her skull into a hardwood floor, blood sprinkling her face, almost splattering the camera. Another video documented an autistic boy whose daily habit of shoving hands down his throat until he vomited—resulted in severe dehydration and malnutrition, until a finally judge ordered skin shock therapy to save his life..

For many of the JRC students, the suppression of self-injury led to the first time in years they could get dental or medical care exams. Or have a day in their lives where they were held hostage to constant self-harm. 

During this 1995 visit to JRC, I recall Security cameras scanned the classrooms and hallways at JRC, ensuring student safety. Several students wore the GED device. “He receives a shock contingent upon hitting his head,” said the psychologist, pointing to a student who, according to Dr. Israel, had bitten half the nose off a teacher, punched out staff members and repeatedly driven his skull into walls. Wearing the GED now, this same student, was calmly placing beads on a piece of rope and smiling.

“Does skin shock hurt?” I asked. “No,” said Dr. Israel. “You’ll feel a mild sting, like a rubber band snap—and that’s about it.” I confess, I was a bit nervous. “Go ahead, put it on,” I said, feeling my heart race. A staff member attached the device. “Are you ready?” she asked. “Ready,” I said. She pushed the button on the remote. A deep vibration tickled my skin for about 1 second. “Is that it?” I asked. The sting was brief, like a skin pinch, but didn’t linger, and isolated to the point of skin contact. 

I observed another student. “We obtained a court order for this student’s device,” said Dr. Israel. “He had mutilated his genitals and pulled his colon out.” “How does someone do that to themselves?  I asked, queasy from the image. “He shoved his hand down his pants and throat…just tore things out...,” said a staff member.  “Nothing stopped him, until skin shock therapy." Dear God, why? WHY? WHY, do we have to be faced with such horrors? And gut-wrenching decisions to help stop a behavior that most people don't even know exists? Can I scream now, God, because I'm terrified. Terrified for my son, terrified for all who suffer with this devastating behavior.

Because JRC used skin shock they made enemies. Cruel and combative enemies. Consider the October 11, 1995 report by David Armstrong of the Boston Globe: “A Judge in Massachusetts, accusing state officials of exhibiting ‘pervasive public corruption’ has ordered [Mary Cerreto and Philip Campbell) to pay more than one million dollars to an area center (JRC) which treats self-injurious students.

Judge Elizabeth O’Neil LaStaiti charged that Campbell, Commissioner of the Massachusetts Department of Mental Retardation, and top aide, Cerreto, used unethical measures in an attempt to shut down the Judge Rotenberg Center. I wonder how much energy that went into attacking Dr. Israel went into finding cures and offering in-home assistance went into helping these vulnerable autistic people and their families. Or how much energy was spent advocating for more staffing, better medications or autism programs.

According to LaStaiti, Campbell and Cerreto had a ‘personal bias’ against the center because it sometimes uses aversive therapy to handle dangerous behaviors. ‘The findings of this court,’ LaStaiti ruled, ‘include findings that high ranking government officials have been deliberately untruthful on the witness stand,; expended public funds to pursue baseless allegations (gee, and we wonder where our tax dollars go)  have authorized unfounded ethical attacks and launched investigations on court personnel, constituting pervasive public corruption.” Way to go Campbell and Cerreto. Way to look out for the RARE cases of people who require lifesaving skin shock therapy. God help  these two if they need chemotherapy to save their lives.  After all, it's "aversive." It's "painful."
The controversy over skin shock therapy has a long history, making its way onto  20/20 ("When All Else Fails, 1986); Oprah (1993) and CNN (with Brian Jenkins, 1995). Upon reviewing news tapes, Oprah’s segment stuck with me: Audience was mostly parents whose autistic, self-injurious children hadn’t responded to therapies and required court-ordered skin shock therapy. Guests included, Anne Donnellan and Connie Lapin, a fierce, hostile, pair who openly opposed skin shock therapy, though neither had children with severe, chronic, health damaging self-injurious behavior. Interestingly, Donnellan, who appeared high on herself, never directly answered questions from audience--while Lapin sat pinched faced, as if she’d been constipated for months.

When a mother of a self-abusive child using skin shock asked Lapin what she thought parents should do when treatments for self-injury fail, Lapin rolled her eyes and said in a singsong voice, “You have to treat them like human beings.” How insulting! As if the parent hadn’t.  This, of course, caused an immediate audience uproar. To wit, Donnellan, hollered over outraged audience: “Skin shock is like a cattle prod!” “What’s next? Shocking BLACK children?”  A hush blew over the set. Then a riot nearly broke out. An African American mother (whose kid used skin shock) from the audience shouted:. “Why is she referring to black children?” Yes, why was she? We know why. That’s what people who have no good argument do. They fire rounds of incendiary words as diversionary tactics.

As Oprah pacified the insulted parents of children and teens using therapeutic skin shock therapy, tempers softened and parents began telling heartbreaking stories of failed behavioral and educational treatments for their self-abusive children. As they spoke, Lapin’s face soured, as if the reality of other people’s pain left a bad taste. Meantime, Donnellan interrupted grieving parents with the empathy of a saber-toothed tiger, and shamelessly extolled her book on positive behavior interventions. Clearly, it didn’t matter if a myriad of inept therapies had failed or that research showed skin shock therapy was, in rare instances, the best adjunctive therapy. Donnellan and Lapin remained hopelessly irrational.
Ironically, in 1989, the famous Harvard psychologist, American behaviorist, B.F. Skinner,
writing to the Massachusetts Senate to oppose anti-aversive legislation, wrote: “Although I have done everything I can do minimize use of aversives in schools and elsewhere…there are legitimate uses of aversive behavioral therapy that have considerable value, and that the Bill would make it impossible to give many people the help they need.” In, A Statement on Punishment, Skinner wrote, “The use of punishment is widely debated, especially in connection with education and therapy. Punishment is usually used to the advantage of the punisher, but there are exceptions, and they can sometimes be justified. Some autistic children, for example, will seriously injure themselves or engage in other excessive behavior unless drugged or restrained, and other treatment is virtually impossible. If brief and harmless aversive stimuli, made precisely contingent on self-destructive behavior, suppresses the behavior and leaves the children free to develop in other ways, I believe it can be justified. [However], to remain satisfied with punishment without exploring non punitive alternatives is the real mistake.”  This is a man who had a logical mind. He is saying skin shock therapy, in rare cases, is warranted, so LONG as you don't use it in the absence of other therapies. I agree. Skin shock should be used as a last resort, RESCUE medical intervention, when intracable self-injury poses a repeated threat to health and safety of a person who, by internal dysregulations, can't control urge to stop savagely self-abusing--no matter how many drugs or positive interventions tried.
In 1989, a federal panel of experts, convened by the National Institute of Health, issued a statement in favor of skin shock therapy— when other methods failed. The panel had suggested exploring skin shock therapy and said self-injurious persons were overmedicated and caregivers for disabled were untrained, underpaid and unqualified.
In Dr. Siegel’s book, The World of the Autistic Child, she wrote: “It is worth discussing physical aversives and learning more about what they can and can’t do to change behavior.” Psychiatrists Harold Kaplan and Benjamin Sadock, writing in their book, “Synopsis of Psychiatry,” describe aversion therapy as “therapy used for …behaviors with impulsive or compulsive qualities.” On page 205 of “Let Me Hear Your Voice,” Catherine Maurice writes: “We have heard of devastating cases where a child’s self-injurious behavior was so severe as to threaten sight, hearing or even his life...all three of us believe in the necessity of some aversives, in some circumstances, with some children.” One of the greatest authorities on autism, Dr. Rimland, in 1993, wrote,  “In recent years our society has been directed—often to the detriment of the handicapped—by ideas based on good wishes and fantasies than factual information and rational thought…I have coined the word advozealot to characterize people who purport to be advocates for the handicapped but are zealous advocates of their own Alice in Wonderland ideology…A major weapon of the advoealots is politically correct (PC) language. They insist words like “autistic”, “retarded” and “handicapped” not be used. They insist the silly euphemism “challenging” be used to describe severely self-injurious or assaultive behavior… Pretending the handicapped are not handicapped robs them of the respect they deserve and the tremendous effort they must exert to achieve small accomplishments that come easily to the rest of us… You can’t solve problems by hiding from them, or smothering them in a fog of murky words…How do we combat these seductive but pernicious ideas, which are implemented so uncritically? Do not meekly accept the advozealots arrogant assumption of the moral high ground…The advozealots, some with a hidden agenda and others with the best of intentions, have done much harm...The idea of using electric shock on a handicapped person is…outrageous to the anti-aversive people…and is repugnant to me also [but] it is not nearly as repugnant as some the things severely self-injurious people do to themselves, such as causing blindness, fracturing skulls or chewing off both thumbs. I have tried SIBIS device on myself. It produces discomfort, not pain. Its nine-volt transistor battery provides a…rather unpleasant, stinging sensation…there is no residual discomfort or skin irritation.” THINK TEN's UNIT: "The TENS unit is turned on, generating a small electrical shock which stimulates the nerves in the area." Now think skin shock therapy. BOTH generate a small electrical shock which stimulates nerves to reduce pain or INTERRUPT an out of control self-abusive fit. Have you ever seen one? It's insane. Nothing stops it, not even mega-drugs and restraints. Unless you've WITNESSED this TYPE of rare self-abusive behavior in autism, I suggest you start learning more about it before you shoot your mouth off about the evils of aversive therapy. I have ZERO tolerance for people who don't educate themselves on the reality of other people's pain and suffering, but have the temerity to judge others and tell them how to live their lives.
In a letter to me on July 15, 1995, Behavioral Psychologist Dr. Laura Schriebman wrote: “Behavioral approaches, such as SIBIS, have been successful in treatment of self-injurious behavior.” Rather than joining the revolution against aversive therapy, the above professionals cited supported reformation with a call to consider the old ways, in unique situations— whereas anti-aversive revolutionists deemed everything old as outdated and evil. Surely, such fanaticism was and is counterproductive to treating persons with disabilities

1 comment:

Unknown said...

Kim --

I'm a health and science reporter in New York, currently writing a story on self-injurious behavior among autistic kids, and the strategies to cope with it.

I came across your blog and was really blown away by your insights. I was hoping you could share some of your stories and experiences with me, and offer some comments for the piece.

Please shoot me an email...katiedrumm@gmail.com. I hope we can connect soon.


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