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Will the FDA kill Samantha Shear?

 

Will the FDA kill Samantha Shear?

Samantha Shear is a 21-year-old girl with autism. For years, her parents unsuccessfully sought a treatment to help control Samantha’s violent and self-destructive behavior. After trying almost every option, her parents found a course of treatment that they say helped their daughter. But because the treatment includes electro-shock therapy, the Food and Drug Administration (FDA) is considering banning the treatment.

Whatever one thinks of electro-shock therapy, the real question in this case is who should decide what is the best course of treatment for Samantha — her parents, or the federal bureaucrats at the FDA?  Those inclined to side with the FDA should ask themselves if they really believe the FDA cares more for Samantha than her own parents?

You can learn more about this case by reading Samantha’s parents’ Washington Post Op-Ed here, excerpted below:

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….

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….

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.

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….

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….

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….

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