Skin Shock Saved My Brother’s Life

I have identical twin brothers and a daughter who all have autism.  I am also a practicing psychiatrist who completed a fellowship at the Seaver and New York Autism Center at Mount Sinai Hospital.  I am responding to the article “FDA Considers Ban on Shock Therapy Devices for Behavior Control”.

I am very concerned about the FDA’s decision to consider banning this treatment, known as an aversive, which has saved my brother’s and other individuals’ lives. The cases that often result in treatment with aversives, such as head banging making someone blind and requiring seven surgeries to restore eyesight, or biting a hole through the cheek, are not cases seen in most psychiatrists’ everyday practice. It is easy to dismiss aversive treatment if you have not personally seen the positives that it can bring about.

I shared my experiences with this treatment when I presented at the FDA’s hearing on April 24, 2014. In fact, I have tried the shock myself.  It is only two seconds, is applied to the surface of the skin, and is combined with mostly positive reinforcement. Neither my brother nor I have ever experienced a side effect. My brother has even asked to wear the device and also is on seven positive behavior contracts at once and earns preferred items throughout the day for being safe.

My Brother’s Story

You might be wondering about my brother’s story. When he was living at home, my brother banged his head into sharp corners. At home, he also developed neuroleptic malignant syndrome from haloperidol. When he required surgery to his head from self-injury, he was in the hospital for five and a half months, and, despite having a staff member present with him around the clock, he continued to need repeated suturing for repeated head banging.

This all occurred despite polypharmacy with five medications with their adverse effects of obesity, tardive dyskinesia, loss of ability to verbally communicate, drooling, and excessive daytime sedation.

The only school that accepted my brother was the Judge Rotenberg Center, where he has been for twenty-five years, has had no head banging without medication, and has taken overnight trips with us.  In 2011, when an attempt was made to remove the skin shock device, he perforated his tympanic membranes and had to go to the hospital for the first time since entering the school.   

He received 200 applications of skin shock in the first year but none for the past two years.  Like a few other students, he habituated to the less intensive skin shock device and the more intensive one, GED-4, was then used.  In 2000, the FDA informed the school that no clearance would be necessary because the GED-4 devices were covered under a practice of medicine exemption. However, the FDA abruptly reversed its position in 2011, even though families stated that the device saved their children’s lives. The school offered to conduct more study on the GED devices and meet again with the FDA. This request was not responded to for over a year until the school found out about the advisory panel hearing two weeks prior.

My other brother, who is not at JRC or on an aversive conditioning device, previously worked full time without any medication.  He moved into a New York State funded residence while employed.  He was fired after being teased by another worker and responding by grabbing the co-worker’s butcher knife. Subsequently, my brother tried to set a peer and himself on fire.  He has had numerous hospitalizations, has failed positive behavior supports with functional behavior assessment, and has had at least fifteen medication trials, which caused obesity, tardive dyskinesia, sedation and seizures.  

Yet we cannot get him the help he needs due to the aversives ban in New York.  He was best friends with his identical twin, but they cannot live together due to New York’s refusal to allow aversives.  It is very sad that our family must live in different parts of the country due to politics. 

Aversives and skin shock have been debated for decades. Eric Schopler, originator of the research based TEACCH program (which is used throughout the United States and internationally in public and private special education programs and adult day programs) discussed aversives in 1990. 

He calls the critics ‘self serving ideologues’ who drastically oversimplify the issue with emotional arguments and ‘are making a fortune going around doing workshops on how to never use aversives.’”[1].

Contrary to popular belief, there are over 112 peer-reviewed articles to support the efficacy of skin shock treatment for behaviors. In a literature analysis on punishment including skin shock, it was stated, “On the basis of these findings, numerous authors have recommended using moderate or high-intensity punishers to treat problem behavior and cautioned against increasing the intensity of punishment gradually over time.” [2]

Furthermore, the research on positive-only treatments shows significant limitations, including defining "severe" behaviors, as seen in an excerpt from a chapter on hypothesis-based intervention for severe problem behavior (Carr et al, 1999).  The chapter states “In both instances, the behavior of concern—screaming, spitting at the teacher, grabbing another child’s hair, or throwing her school work off the desk would be considered by many classroom teachers and practitioners to be fairly commonplace rather than severe.”[3]

However, this is not the behavior my brother had, banging his head into sharp objects requiring surgery. Furthermore, positive behavior supports are only effective in about half of cases to suppress the frequency of behavior by 90%, [4] which is not sufficient for a life-threatening behavior.

In practice, at least in New York, people are discharged or suspended from their day programs due to their behaviors, often leaving them alone with an elderly parent in a potentially very dangerous situation.  Two prior students from Judge Rotenberg Center were taken off the skin shock devices, returned to New York, and died from their self-injury in their twenties.  I do not want my brother to die too. 

Although medication management is viewed as an alternative, there are many problems with medication management for self-injury. For example, risperidone received FDA approval for autism despite the fact that placebo-controlled trials did not differentiate between mild and severe behavior in their outcome measures and that there were no published line-by-line analyses of the Aberrant Behavior Checklist-Irritability Subscale, as only three of the fifteen components relate to self-injury [5,6], and the sedation rate in the autism FDA registration trials was 49%. [7]

In addition, in placebo-controlled trials of aripiprazole, self-injury in persons with autism did not improve significantly more in aripiprazole-treated children than in children in the placebo group,[8] but the FDA approval was still granted for self-injury in autism. Furthermore, up to 60% of individuals with autism without clinical seizures have been reported to have epileptiform discharges on EEGs, [9] and the above medications will increase their risk for seizures.

It also can be particularly dangerous to use medication in individuals who cannot communicate side effects and are unable to comply with prescribing guidelines such as blood pressure and blood tests.  Using aversives decreases and even stops the need for psychotropic medications, as it did in my brother. Use of aversives has also allowed individuals with significant cognitive impairments who are unable to make risk-benefit decisions to have physical exams.

An Improper Investigation

Regarding side effects and investigations of skin shock, the FDA relied on phone interviews without obtaining any collateral information from a treating physician or therapist. When New York investigated they also did not obtain collateral information. In fact, the Judge Rotenberg Center only found out through the New York State report that a student reported being suicidal. 

The psychologists who did the investigation never alerted staff or family. In addition, the United Nations, who reportedly conducted an investigation, has never visited the school or asked to speak with a family member.

There have also been concerns about burns from the treatment, but, while there may be temporary redness, a pediatrician testified at the hearing that he consulted with a dermatologist that these were not burns. Furthermore, when police were called for possible burns, the police documented that no burns were present. 

In contrast, research has shown positive side effects with skin shock. In one study “Positive side effects indicating an improved affective state and increased interaction with the environment were documented. Treatment gains were maintained at a one-year follow-up assessment. The consistent reports of positive affective side effects from successful treatment studies using SIBIS (self-injurious behavior inhibiting system) and contingent electric shock are noted”. [10] The child in this study even had an increase in self-initiated toy play. 

In another study, this one done at Judge Rotenberg Center, “the side effects of contingent shock (CS) treatment were addressed with a group of nine individuals, who showed severe forms of self-injurious behavior (SIB) and aggressive behavior. Side effects were assigned to one of the following four behavior categories; (a) positive verbal and nonverbal utterances, (b) negative verbal and nonverbal utterances, (c) socially appropriate behaviors, and (d) time off work. When treatment was compared to baseline measures, results showed that with all behavior categories, individuals either significantly improved, or did not show any change. Negative side effects failed to be found in this study.” [11]

Placebo-Controlled Trials

It was discussed at the hearing that there need to be placebo-controlled trials with skin shock, yet I find this idea untenable for several reasons.  First, it may be unethical to give someone a placebo with acute life-threatening behavior.  Also, how could the observer really be blind to who is given a skin shock application when the person’s reaction would be observable?  I did make a vocalization myself when I tried the shock.  

Additionally, placebo-controlled trials, while important, have limitations.  Even if results are statistically significant, there may be a large number of people to treat before finding a clinically meaningful response.  In addition, if the sample size is large enough, there may be a statistically significant result even if the magnitude of change is small. That is not acceptable for a life-threatening behavior. 

As an alternative, single-case and multiple-case studies with baselines reporting actual frequencies of a given behavior do have some utility to see individual, clinically meaningful change and are often used in behavior analytic research, including skin shock treatment.

I do not understand why the shock device is being held to a different standard than medication, especially when the risk of no treatment can be death and when off-label polypharmacy trials examining adverse effects have never been done on this population.

Just as New York does not approve the use of aversives, New York also does not approve one-to-one applied behavior analysis schools, despite research evidence that with such intervention at a very young age, self-injury may be preventable [12] as well as improve functioning. [13] To obtain this treatment for my daughter with autism, I had to spend, in this year alone, $102,000 on my daughter’s autism school tuition. I also have to file every year for an impartial hearing to seek reimbursement.  The lack of free and appropriate programs is causing unnecessary stress to families as well as resulting in economic segregation.

Furthermore, in 2011, New York State removed the minimum speech and language requirement of two half hours for thirty minutes to no minimum requirement at all for any child who qualified for speech and language therapy, and they removed the daily language requirement for children with autism, despite evidence that communication is vital and can help to reduce the chances of self-injury.  “For example, it appears that when communication skills are improved, the rate of inappropriate behaviors decreases,” [14]and “many of these extreme behaviors may be due to large part to the child’s defective language skills” and “language training needs to be a major component of programs for children with ASD.” [15]

I strongly believe that if we fund early intervention and special education with evidence-based services properly, we can cut down on the need for aversives and psychotropic medications later. I also think that, when medically appropriate, the use of aversive treatments can save lives.

References

1. Holden C. What’s holding up “aversives” report? Science. 1990;249(4972): 980-981.

 2.  Lerman DC, Vorndran CM. On the status of knowledge for using punishment: Implications for treating behavior disorders. Journal of Applied Behavior Analysis. 2002; 35: 441.

3. Foxx, RM. Severe Aggressive and Self-Destructive Behavior: The Myth of the Nonaversive Treatment of Severe Behaviors. In: Jacobson JW, Foxx RM, Mulick JA. Controversial Therapies for Developmental Disabilities . Lawrence Erlbaum Associates;2005: 304-305.

4. Carr EG; Horner RH, Turnbull RH, Marquis AP, Mc Laughlin JG, Magito D, Mate, ML, Doolabh A, Braddock D. Positive behavior support for people with developmental disabilities: A research synthesis . Washington, DC: American Association on Mental Retardation;1999.

5. McCracken JT, McGough J, Shah B, et al. Risperidone in children with autism and serious behavioral problems. N Engl J Med . 2002;347:314-321.

6. Shea S, Turgay A, Caroll A, et al.  Risperidone in the treatment of disruptive behavioral symptoms in children with autistic and other pervasive developmental disorders. Pediatrics. 2004;114(5).

7. Goldberg, J. Ernst CL. Managing the Side Effects of Psychotropic Medications. 2012: 72.

8. Aman MG, Kasper W, Manos G, et al.  Line-item analysis of the Aberrant Behavior Checklist: results from two studies of aripiprazole in the treatment of irritability associated with autistic disorder.  Journal of Child and Adolescent Psychopharmacology . 2010;20(5):415-422.

9. Spence SJ, Schneider MT.  The role of epilepsy and epileptiform EEGs in autism spectrum disorders. Pediatric Research. 2009;65(6): 599-606.

10.  Linscheid TR, Pejeau C, Cohen S, Footo-Lenz M. Positive side effects in the treatment of SIB using the self-injurious behavior inhibiting system (SIBIS):  Implications for operant and biochemical explanations of SIB. Res Dev Disabil 1994;15(1):81-90. 

11.  Van Oorsouw WMWJ, Israel ML, vonHeyn RE, Duker PC. Side effects of contingent shock treatment.  Res Dev Disabil . 2008;29(6):513–523.

12. Williams BF, Williams RL. Observations and Reflections, Chapter 14 . In William BF, Williams RL. Effective Programs for Treating Autism Spectrum Disorder: Applied Behavior Analysis Models ; 240.

13. Ingvarsson ET, Case studies in context:  A review of triumphs in early autism treatment, edited by Ennio Cipani.  Behavior Analysis in Practice. 2009; 2(2): 69-72.

14. Williams BF, Williams RL. Applied Behavior Analysis Models, Chapter 7. Effective Programs for Treating Autism Spectrum Disorder : The Koegel Center Pivotal Response Training; 125.

15. Williams BF, Williams RL. Strategic Teaching and Reinforcement Systems: Verbal Behavior, Applied Behavior Analysis Models, Chapter 8. Effective Programs for Treating Autism Spectrum Disorder;147.

Ilana Slaff-Galatan, MD, is a psychiatrist who completed an autism research fellowship at Mount Sinai Hospital in New York. She also has identical twin brothers and a daughter with autism and life-threatening behaviors.   She assisted with editing the chapter “Complementary and Alternative Therapies for Autism” in the textbook "Clinical Treatment Manual for Autism", published 2007, and has given continuing medical education lectures internationally on autism spectrum disorders. She currently treats individuals with autism and other developmental disabilities including assisting with development of behavior intervention plans.

The views expressed on this blog are solely those of the blog post author and do not necessarily reflect the views of Psych Congress Network or other Psych Congress Network authors. Blog entries are not medical advice.