Samantha, our 21-year-old daughter, attacked other children, her teachers, and us. She bit, scratched, kicked, hit, pinched, and head-butted whoever was in range. Her relentless compulsion for self-abuse led her to throw herself on the floor. When she was 12 years old, she finally hit herself in the head hard enough to detach both retinas, rendering herself virtually blind. Her autism was so bad that it proved impervious to professional therapists, powerful medications, and the love of her parents and siblings. She was expelled from numerous schools and treatment centers. Her life was in danger.
Then, after years of this self-abuse, something happened. We found a program for Samantha that actually works — the Judge Rotenberg Educational Center (JRC) in Canton, Mass. JRC’s behavioral treatment, including a controversial electrical device, is a program of last resort to treat children and adults with life-threatening behavior disorders that are resistant to all other forms of psychological and psychiatric care. The results are life-changing. Within several weeks of beginning a kind of electrical-shock treatment, Sam stopped hitting herself. She stopped her other violent behaviors. We weaned her off all of the damaging and ineffective psychotropic medications. Sam is now a completely different person – happy, beautiful, and often singing. No sign of the bloodied and bruised 80-pound girl who was once legally blind and forced to wear a helmet, neck brace, and arm splints. We had our daughter back.
Yet the FDA is now considering a ban on the treatment that saved Samantha’s life, despite a unanimous finding by its own advisory panel that no other option exists for this group of people with dangerous behavior disorders. If the Graduated Electronic Decelerator (“GED”) disappears, we’re worried we’ll lose our daughter all over again.
Our family first learned about JRC and its shock treatment when Sam was 12 years old and the school she was attending – her fourth to date – told us that it too could not handle her. JRC is the only school in the country that will accept people with the most severe behavior disorders. Its GED device, operated by trained staff, delivers a two-second electrical impulse to the skin on arms or legs, immediately following a targeted behavior. The device is part of a behavioral treatment plan (including positive reinforcement, training, education and repetition) designed by Board Certified Behavioral Analysts and psychologists and approved by a Massachusetts Court. For Sam and others, it is the only treatment that has ever proven effective to control her violent behaviors.
JRC has used GED treatment for over 20 years and it has proven to be safe, extremely beneficial and lifesaving for many students like Sam when all other treatments had failed. There are over 110 scientific articles supporting the efficacy and safety of the skin shock. Yet a group of people in the autism community, almost all of whom have never visited JRC or lived with a child with these behaviors, have done everything possible to ban the treatment, because they find the thought of shocking children offensive. They have tried the courts, the Massachusetts legislature, the New York State Legislature, the U.S. Justice Department, and even the United Nations to stop a program that saved my child’s life. They have now gone to the FDA, which may grant them their wish.
These autism advocates claim that positive reinforcement and drugs would work just as well. I know from personal experience that they’re absolutely wrong: Obviously we tried that! The FDA panel originally agreed, too, that those treatments would not suffice for some patients with life-threatening behavior disorders. But that same panel, despite knowing that there are no other options for children like ours, is now recommending banning the GED until more research is conducted. If the FDA ends this treatment, Sam and others like her will again be condemned to lives of self-inflicted mutilation, psychotropic drugs, isolation, restraint, institutionalization, and even sometimes death. We support additional research, but Sam’s treatment should be allowed to continue while it’s underway.
Several years ago, autism advocates successfully passed a regulation in New York restricting the use of skin shock devices, and JRC was forced to temporarily stop using the GED. We watched as Sam became more aggressive and angry. Some of her old violent behaviors reemerged. Thankfully, we obtained an injunction from a federal judge prohibiting enforcement of the regulation, and the GED was again used as indicated in Samantha’s program. Our daughter improved again, became happier, and was no longer aggressive toward herself or others.
The bottom line is that the GED device has saved our daughter where all other programs failed. Free from self-harm and psychotropic drugs, she is able to concentrate, learn and grow. She does not hurt herself or others now. She is happy, social and interactive. She has learned to take care of herself and is being trained in the adult workshop for possible employable skills.
Some people are philosophically opposed to the GED device, but our family doesn’t have the luxury of being philosophical. Now, alongside families like ours, we wait in fear to see whether the FDA will eliminate the one treatment that saves our children’s lives every day.
Dr. and Mrs. Shear’s daughter, Samantha, has been a student at the Judge Rotenberg Center in Canton, Mass., since 2005. He is an internist. The Shears live in Roslyn Heights, N.Y.