Weapons of Autistic Destruction: Violent Words and Violent Deeds
May 23, 2006 by Kristina Chew, PhD
Filed under Health
The Graduated Electronic Decelerator (GED) mentioned in the previous post, Shock in a backpack, is described by Matthew L Israel, Ph.D., as an aversive therapy stimulator whose “role is to receive the electromagnetic signal sent by the remote control device, and to generate an immediate skin shock.” Dr. Israel notes that
Skin shock is not generally used in treatment programs today. This is due to an unfortunate current cultural bias against aversive treatment procedures as well as a general lack of information among the public concerning skin shock’s remarkable effectiveness, its total lack of negative side effects, its safety, and the fact that students often choose it over alternative treatments.
For my part, I am all right with having a “cultural bias against treatment procedures” and cannot quite fathom how a device that delivers an electric shock to a disabled individual’s skin can have a “total lack of negative side effects” and can be about “safety.” I would like to know what the “alternative treatments” are that would result in students “often” choosing electric skin-shock. I say all this as the mother of Charlie, who has self-injurious behaviors–the sort of behavior that the GED or the Self Injurious Behavior Inhibiting System (SIBIS) are used to “treat.”
(In his school and home ABA program, teachers and therapists have helped Charlie to control and drastically decrease self-injurious behavior by working on academic (reading), communication (talking), and play skills.)
GED and SIBIS sound to me more like weapons of “minimal,” maybe massive, destruction against human beings. And it is not weapons that are needed to help Charlie and autistic persons to learn and live well.
It is education of autistic persons and of the general public about autism.
It is not “weapons” against autism that we need, as Autism Speaks co-founder Suzanne Wright is quoted as saying: “Early intervention is our best weapon against autism.”
What we need is real understanding about autistic persons and autism.
Otherwise, the result will be not only violent language about autism, but also real violence against autistics, like the killing of three-year-old Katherine McCarron by her mother. Katherine’s death is terrible proof positive–negative–about the harm—the abuse—the murder of autistics. There have been public outpourings aplenty of pity for family members who (even if they contemplate murder and suicide) are glorified for their “suffering” in raising an autistic child, while the greatest (unglorified) suffering is the child’s. And not to think first of that child and of her or his needs is yet another act of violence…………..
……….. I am having a very hard time finishing this post whose vocabulary of more than fighting words–violence, weapons, killing, murder, violence–keeps making me (as it should) shiver. The death of a autistic child at her autism mother’s hands is terrifying even to think about for me, being an autism mother of an autistic child. My mind keeps turning to–frivolously to some, perhaps—Greek mythology, to Greek tragedy, to Agamemnon who allows his daughter Iphigeneia to be sacrificed so that the Greek ships can sail to Troy, in revenge for which his wife Klytemnestra murders him in his bath after he returns home from the war.
Aeschylus’ Agamemnon presents this deed, as well as the murder of the Trojan princess Kassandra who predicts her death in visions of blood-drenched walls. But it is other words of Aeschylus that make a gesture towards summing up what I feel in reading about the dead Katherine and her living mother:
pathe mathon
learning by sufferings
It is hard to think of what we can learn from real tragedy, not only the kind the ancient Greeks wrote. But learning is what we must–is what we can–do.
Requiescat in pace, Katherine McCarron
What I’d like to know (or probably not) is what the “consequences” are of attempting to remove, or actually removing, the “shock in a backpack” device. The people at these places must have some pretty serious means of intimidation and threat at their disposal if they can manage to get these supposedly “unreachable” and “noncompliant” kids to wear these devices constantly.
The thought of the staff at this sort of place makes me speechless. We have had people say “have you thought about a helmet” too many times regarding to Charlie—and what I’ve always most shivered at is the bland, mock-worried tone of their voices.
One of the photos on the website showed the SIBIS bandaged/strapped onto a student’s hand or arm. I know Charlie would be furious and, well, it would not be good.
Kristina,
I don’t want to disturb Katherine McCarron Day, which by rights should belong to contemplation of this little girl’s terrible death, and memorializing her life, but the topic of skin shock, other aversives and the ethics of use is one that I think about quite a bit…mostly because my teaching of my ASD daughter is focussed almost exclusively on positive reinforcement and I am concerned with how casually some discuss things that would have me in trouble with Child Protective Services if I applied them to my NT daughter or any other child.
I also shiver at some things which have been casually mentioned online by some folks– restraints (chemical, physical, mechanical), squirting lemon juice in kids’ mouths, tabasco sauce, among others. I was roundly attacked for saying that I wouldn’t do it to a pet, why would I even ever contemplate doing it to a child, especially one with with a developmental disability who might well find it an incomprehensible nightmare. When it is mentioned in context of not even having done a functional assessment as to whether the “intervention” makes any sense at all in any context, I feel ill. Even proponents state that aversives teach nothing, except fear. There are many who don’t seem to “get” that simple fact.
I don’t know if I were given the “choice” for myself of any of the above or skin shock, what I would choose.
There is some study about escalation of aversives, especially in situations where people might veer to the side of expediency vs. more painstaking instruction using positive reinforcement or other supports. The first (few) times it is hard to do and painful to watch, but if it works well to stop an unpleasant situation, the user may be reinforced to use an aversive consequence more quickly and more often. Unfortunately, with routine the person receiving aversives can also habituate and mild aversives lose their power, so the other side ups the ante. Eventually a situation can be shaped where nothing but the strongest aversives work to stop behavior and the person on the giving end is more blase than someone naive. A terrible scenario.
I will be honest–if I were faced with a situation where the alternative was a person who would be placed in full restraint at all times because of imminent danger to themself or had a possibility of improved quality of life via skin shock I might choose the latter, but it is not a drop shot by any means. If someone reads this and has a better alternative in that scenario, I would be interested in what they see. I am sure that there are many others who are more versed in the possibilities. I believe that Herb Lovett had some ideas in positive planning for people seen as “difficult”, but I have not had a chance to read his books yet. I would be very interested in what the events were that might have led to the initial situation.
As I said, it is not my intention or desire to poke a debate into a sad day…but I think the question of aversive use and the circumstances of Katie McCarron’s death (should) inspire us all to be utterly honest about what we think about people who are different from ourselves, do we really believe that they are equal or is that qualified deep down where no one sees? What are our ethics?
Regan
Regan, It’s going to take me some time to process your response and I thank you more than much for it. We too teach Charlie in an ABA program that is entirely based on positive reinforcement.
What you describe about the use of aversives, such as restraints, rings a familiar bell, most unfortunately. When he was in a former program, Charlie’s head-banging was responded to with basket-holds. Over time, he had to be restrained in this manner for longer periods while his aggressive behavior escalated–and he therefore had to be held even more tightly, and the “terrible scenario” resulted in which we heard the phrase “have you ever thought of a helmet” more than a few times.
Charlie was not in an ABA classroom when this happened.
Now, when Charlie is upset, anything more than minimal physical contact can set him off for a long time. So the best response (now) has been to put a pillow under his head, and most times this calms him down quickly. — And, very disturbingly, he will sometimes stage “mock tantrums” in which he “pretends” to “restrain” himself. And yells and laughs.
I think, in the instances described over, ethics were not thought of, at all.
My daughter used the skin shock device SIBIS for several years. It saved her life. Prior to skin shock, over 29 professionals had tried to help her, including one we paid over 3000 dollars to, working with her day and night. Nothing stopped the self abuse until the medically prescribed skin shock device. We used it for two years and then by time she was healed from all the bruised and lacerations she had caused herself during the years of uncontrolled SIB. What a great device this was. I’m surprised so many people oppose it. They must not have a child with treatment resistent self injurious behaivor.
Thank you for commenting here, Tony, about your daughter. My son had SIBs but not as resistant as hers. How is she doing now?
So, Tony, did you wear one too?
*wants to apply said devices to proponents. Really. See if they still love them so much after a month or so. In the name of science*
I wanted to add, I hope the SIBs have not returned—
All I ever wanted (and still want) for my son was comfort, protection and happiness. And the three are synergistic. Of course, this may sound trite, but if you knew my son youd understand. Jamey was born in March of 1989 and diagnosed with severe autism a year later. Two month later, he was diagnosed with epilepsy. His seizures were the kind of crazy scenario that sucked the breath from you while pumping you with adrenaline. Soon after, another diagnosis: ataxia, a mild form of cerebral palsy. This explained why it took him months to learn to drink from a cup. As if this wasnt heartbreaking enough, when he was two years old, he started punching himself in the head (self-injurious behavior).Immediately, I sought help.
There are ways state agencies can infiltrate your life and render more damage than if you were left alone. Case in point: California Department of Education and Regional Centers. From 1991 to 1995, both agencies sent an army of professionals to help my autistic son who suffers from self-injurious behavior. Over and over, professionals offered ineffective treatments and wrote reports. Fed up, I did extensive research and discovered a medically prescribed a mild skin shock therapy that would stop my sons brutal self-abuse. Regional Centers response? The same behavioral specialists that failed to help my son REFUSED to support my sons treatment. Why? Because Regional employees said it would set a prescendent. Apparently, my son was collateral damage to protect some misguided philosophical agenda that vilified any treatment that Regional didnt offer. Despite the opposition, I went ahead with skin shock therapy. Immediately, it reduced the brutal behavior and my son was freed from being held captive to his uncontrollable urges to smash his skull with his fists. Sadly, I will never forget the betrayal and torment we suffered under the tyranny of Regional employees who left us behind. Anyone who thinks I’m making this up should examine the following evidence about California’s dark system serving disabled:
· San Francisco Chronicle: August 4, 1997; Agencies for disabled in disarray. The sprawling bureaucracy that controls more than $1 billion a year for developmentally disabled Californians is plagued by mismanagement and financial abuses so severe that the health and safety of the disabled have been jeopardized. State officials have known for two decades of serious problems in the network of 21 private, state-funded regional centers&More than 100 interviews and thousands of pages of audits, state reports and court documents revealed that some centers have been linked to embezzlement, fraud and unethical financial deals. Hundreds of children and adults with varying degrees of mental retardation, autism and cerebral palsy have received inadequate servicesor no services at allthough the state and federal governments have increased regional center budgets by millions of dollars a year.
· December 5, 1997, Chronicle writer Edward W. Lempinen, wrote: In a scathing report hand-delivered to top state officials yesterday, the U.S. Health Care Financing Administration criticized the state for risking the health and safety of the disabled, lax state oversight of their care and mismanagement of federal funds& Disabled people and their families who complain about services sometimes suffer retaliation from those who oversee their care.
· Legislative Analyst’s Office
February 2006 Analysts wrote there are, &serious concerns about &quality of care or access to care for Regional Center clients. Source: http://www.lao.ca.gov/analysis_2006/health_ss/hss_11_4300_anl06.html
· Since the 1997 San Francisco investigative news coverage the only thing proposed to help track and monitor disabled persons within the Regional Center has been in 2006: Under the client-tracking legislation, SB 571, each regional center would have to submit a Client Development Evaluation Report on each client at least every 15 months. The Department of Developmental Services, the primary agency monitoring Regional Centers opposed the bill. The bill was later gutted. Why? Because they dont want the public to know see the pervasive neglect of disabled and the total failure of the system serving disabled.
· June 23, 2001, Los Angeles Times: State officials have moved to revoke the licenses of 14 homes and day care centers for developmentally disabled adults operated by an Anaheim company accused of allowing clients to be sexually and physically abused&.California Department of Social Services accused Westview Services of a variety of health and safety violations at the facilities, which are licensed to serve about 530 people in Orange and Los Angeles counties. Again, Regional Centers were responsible for monitoring the disabled inside the group homes.
· March 18, 2001 San Francisco Chronicle explains Regional Centers shockingly LONG history of ineptitude: In 1965, the legislature created two pilot organizations for providing community services in San Francisco and Los Angeles. Called regional centers, they served as nonprofit brokers between state coffers and local suppliers of housing, training and other services to the disabled& State legislators, though, soon learned of serious problems in the new community care system. Reports and audits submitted to them in 1976 and 1988 described abuses of power, high turnover among social workers, poor accounting practices and chronic budget deficits at the regional centers.
· February 25, 2001, The Sacramento Bee reported: &a class-action lawsuit filed last year in an Oakland federal court on behalf of several disabled Californians and a handful of advocacy groups&. Allegations are that the state has failed to provide adequate services for disabled people&.
· Another story regarding Regional Centers incompetence to monitor or care for disabled persons appeared in the January 12-18, 2005, Silicon Valley’s Weekly Newspaper: Oversight at community-care facilities has been riddled with controversy since 1997, when the San Francisco Chronicle published a series of stories that shed light on serious problems..
· A January, 2006 study by the national professional journal, reported, &care in the community is generally considered to be a problem for persons with developmental disabilities. Shortcomings have been noted regarding Medicaid reimbursement, the lack of trained practitioners, and the coordination of care (Regional Centers are responsible for coordination of care)&” Source: http://psychtechs.net/pages/indexes.cgi
· October 23, 2006, in a Blog entry, a former Regional Center psychologist wrote: Because Regional Centers have so much power they are like the Mafia of the 1920’s. Embezzlement, favoritism, bribes, kickbacks, discrimination are commonplace [inside Regional Centers]& Care providers, families and consumer are at the mercy of this system and dare not speak out&. Regional employees are not above altering documents and reports to give the appearance theyve done more for clients than they really have&.This system has not been monitored and is now out of control. Source: https://www2.blogger.com/comment.do
· Jan 01, 2007, Sacramento Bee reported ongoing saga of failed system serving disabled. Latest discovery: Failure of Regional Centers to monitor or protect disabled has led to hundreds of DEATHS of disabled persons.
So, we can conclude that despite thirty years plus of REGIONAL CENTERS controlling the lives and services of disabled citizens, they are in fact UNFIT FOR DUTY and are a DANGER to many disabled. Suffice it to say, the disabled who remain alive and healthy in this system do so for ONE reason: The aggressive, consistent advocacy of mothers and fathers and other family members of disabled persons. .
Kim Oakley M. Ed
San Diego, CA
Mother of severely autistic child.
Unless you have lived with a child who repeatedly injures herself or himself, I suggest you all refrain from such harsh judgment. Imagine if you had cancer. And the only therapy to save your life was chemotherapy. Yet, you knew the therapy would make you vomit.You’d lose your hair.Your nails would turn black. You’d have to have your breast surgically cut and removed! Oh, how terribly aversive! Yet, it would save your life. Yes, this is the brutal reality of children who are held captive to a live of cancerous self-abuse. A life where they wake up daily and can’t stop mutiltating themselves but the only effective therapy is skin shock device. GOd forbid, this may be your child. God forbid you have to make that hard choice. Yes people, we don’t live in a world where it’s all good and there is no worries. For some people, their lives are paraylyzed daily by living with an autistic child with severe and chronic self injurious behavior. Where are you? Are you there to help these families? Or are you one of the many who just come by and do a casual report and then leave the family behind? Are you one of the researchers who get grant money and then after you find out the child is a long term investment and you take off? Yea, you know who you all are. The big shots. The ones who write and write and talk and talk about self injurious behavior but don’t know a damn thing because you have’nt lived with a person who is tortured by this cruel behavior. You don’t have a clue. You don’t want to have a clue. So spare us all the judgements. Come live with us. Then you’ll see what we mean. This is no easy feat. This is long time, long term investment people. And most of you are too bust in your own busy lives to get this. You just want judge. Be careful what you say about what you don’t know.
@Kyle,
Thank you for writing here; I don’t want to presume, but it sounds like you have an autistic child—–how old is he or she and how is he or she doing?
Here’s a post I wrote about the use of physical restraints to control my son’s self-injurious behavior, and another on the use of physical restraints. Best wishes—
I do not have a self-abusing autistic but a very violent one. He will come at you every 5 mins. he hits and bites, and pulls my hair and chokes me ect. I have not used any restraints yet, but we do lock him in his room to gain safe control. but the older he gets the need is there. He is already medicated. I have been reading this and think if you try other means and nothing else works then what?
Persons with autism who suffer from self injurious beahviors are among the most complex of the autistic population. Anyone who knows anything about autism would know this. That said, it’s time we place a high priority in helping the lower functioning autistics and quit glorifying these alleged high functioning persons, who, most of the time, don’t even have autism.
This site doesn’t get a lot of traffic. Too bad. My best friend’s son is a violent autistic. He is almost 18, about 6′-3″, over 220 lbs. ALL the medications have been used on him. Nothing works. He bites, breaks everything, hits, kicks. His outbursts can be daily for a while, then nothing for a couple of weeks. His dad is the only person who can control him, and now that he is bigger, even that control is minimal. As far as residential treatment, group homes, etc., forget it. There aren’t any that will take him. I’ve known this boy all his life. It is a tragedy and it doesn’t do my friend any good, either. I’m worried the boy will kill him. There has to be something; what, I don’t know.
Imagine someone beating your child. Just the thought triggers intense emotions. Anger. Rage. Fear. Confusion. Now imagine the perpetrator is your child’s hands. And he can’t help it. To live this is crazy. Complex. To witness this, shapes the mind, alters attitudes and colors the world around you. Experts say self-injurious behavior (SIB) affects somewhere between 5 to 17 % of autistic persons. Over 500 research studies have been published on SIB. And there are books, conferences, seminars and symposiums, but no general agreement on treatment. That’s because this is extremely complex. For instance, my son can be happy for 9 hours, then, suddenly, for reasons known or unknown, shift or be triggered into savage self punching fits that require sometimes 2-3 people to protect him from lacerating his face, bloodying his nose, causing a hematoma to ear or knocking out his teeth. This is NOT manic behaivor, nor is it psychiatric. This is a rare combination of neurological, biological and gastroenterological systems that go awry. Another example, if my son is constipated for more then two days (which is chronic) self punching and seizures escalate intermittently until fecal impaction is resolved. Not easy. It’s not fun giving suppositories to a 5 foot nine child who is trying to fling fists into his head. Nor is it fun to change a person when self abusing. Is medication the answer? NO. Been there. Done that, over and over. This type of autistic person is a constant state of impending crisis. The good news is between the chronic crisis’, there are good times, you just can never get too happy or secure because you have to always be alert and ready to protect this type of autistic person. I know, I’ve been revolving in this world for over two decades. It’s like being in a war that has a few peaceful moments but at anytime, you know the bombs are coming again. The answer? You just deal with it. You keep going. YOu try and buffer the madness and melee with happy things like watching comedies and drinnking a good glass of Cabernet Franc….and mostly, you do whatever it takes to keep this person healthy, happy and comfortable…many times my son has been hitting self because he had an undetected, underlying medical issue brewing or looming that was causing him pain or discomfort….ie….H-pylori contracted in a group home he was in (never again, we’re keeping him home…) or a broken toe that was acquired at school that nobody had told me about…or a bee sting nobody saw happen, or a sore throat that he can’t tell us about because he is non verbal…..then, there are other times he hits self when he is startled from sleep, or hypnic jerks startle him, or he’s tired, hungry, thirsty and can’t see the thing he needs to get himself….These are behaviorally fragile individuals…because they are also medically sensitive…..the slightest thing will send these types of autistic persons into a self injurious frenzy that is someting they can’t control, even on medication. You can’t give these type of persons medication 24 hours a day, 365 days a year for an intermittent crisis. The best alternative is physical help and supports to keep this person busy and happy and safe…..hydrotherapy, music therapy, special diet, exercise, massage, whatever works……Ditto, you can apply this to the violent, aggressive autistic…….because, although I don’t have an aggressive autistic child, he is only self abusive, I can imagine the horror of worrying about your child attacking you or others would take a real toll……maybe some things we use could help you…..Hope this helps someone…
WOW! Does anyone have DDD help here? They are helping us cope with some issues.Great program.I will say that you should put your child through lots of exams this may help.My daughter had 2 endos done (found yeast!)Was soooo sick and grumpy.Two large cavitys made her nuts pounding feet!!Now some fissures are back.Look at every part of the darn kids body,maybe they cant tell you why they act out.Mine is non verbal.DOC DEB HERE!!
My 32 year old non-verbal autistic son attacks people out of the blue, biting, scratching, pinching. He weighs 185 lbs. His world is shrinking and we are getting less able to deal with him. We try to concentrate on the in-between times but the violent behaviour changes everything. I am wondering about the skin shock system. We need something to stop the behaviour until we can get him to a safe place. Every drug has been tried. It seems more humane to use this device than to put him in a padded room and forget about him. How can I get information about this device?
I have a 9 yr old violent, SIB autistic daughter and believe me, living a child who beats you up several times a day is like nothing you can imagine, unless you’re already there. She’s medicated, been thru intensive ABA therapy and a 30 day residential facility stay. Nothing’s working. Her SIB is not as dangerous as others have mentioned, thankfully. She’s an obsessive skin-picker, clawing her skin, ripping open scabs, scars and insect bites. We keep her arms wrapped in gauze most of the time. But the violent outbursts are getting unmanageable. She’s so strong, nearly as tall as me and weighs over 100 lbs. Just today she came at me out of the blue at the library and threw me into the book stacks face-first, then pummeled me wildly, screaming her rage. I have no idea what the trigger was this time. It took a few minutes to gather my other 2 children and get her out of the library while fending her off and trying not to hurt her in the process. I’m covered with black bruises and I’m getting weird looks from people when I’m out in public. I keep waiting for someone to report my HUSBAND for abuse. Imagine trying to explain that it’s my 9 y.o. I worry about the safety of the whole family. We’re discussing a new medication regimen with the psychiatrist, but I’m afraid we’re running out of options.
Thanks for listening and not judging.