Last month, Pennsylvania Reps. Tom Murt (R., Montgomery) and Stephen Kinsey (D., Phila.) introduced House Bill 1809, which would ban the use of electroconvulsive therapy (ECT) in children under 16. In his most recent digital newsletter, Murt described ECT as a “brutal” and “barbaric” practice that is “a form of child abuse.”
I was stunned to read an email from an elected official that reflected absolutely no evidence-based research. ECT is not “barbaric” – it is an FDA-approved medical procedure that is performed under general anesthesia on an estimated 100,000 Americans every year. These patients suffer from acute psychiatric conditions, including treatment-resistant depression, bipolar disorder, psychosis and catatonia. More than 14,000 studies in the psychiatric literature confirm that ECT is safe and effective, resolving truly debilitating symptoms in as many as 80 percent of patients.
ECT is not typically prescribed to children, as the disorders for which it is indicated often don’t strike this young population. Murt reports that “three adolescents between the ages of 13 and 17 were electroshocked” in 2014. My son, Jonah, was one of them.
Jonah, now 18, is severely autistic. For almost a decade, he engaged in such dangerous aggressive and self-injurious behaviors that he had to be hospitalized for 10 months when he was only 9 years old. He would beat himself bloody, punch out windows, and scratch, pinch, and bite us. I was terrified he would hurt one of his four younger siblings.
Now, that fear is gone. In 2011, we tried ECT after everything else failed – drugs, behavior plans, alternative therapies, hospitalization at one of the most respected units in the world. And ECT stopped Jonah’s rages.
There is absolutely no doubt that my son would be on a locked ward without it, instead of where he is today: living at home, going to school, enjoying all his favorite community outings. ECT has been so successful in resolving aggressive and self-injurious behaviors in autistic youth that it has been the subject of very positive media attention recently, including a BBC documentary and an article originally published by Spectrum and then reposted by The Atlantic. Our legislature is moving to ban this potentially transformative treatment at a time when more families are discovering it might help profoundly impaired children whose providers have run out of ideas.
ECT has side effects, as most interventions do. The most common are headaches and nausea, with mild and transient memory loss often reported following the initial course of treatment. There is no evidence in the psychiatric literature that ECT causes brain damage, as Murt reports. In fact, studies have documented that ECT causes neurogenesis, the growth of new neurons in the brain. And it’s important to note that the anti-psychotic medications typically prescribed to treat violent behavior in autism have much worse side-effects. Hundreds of children have died due to complications from anti-psychotic use; not one child has ever died from ECT since its introduction more than 80 years ago. Still, the decision to start ECT in patients of any age is never taken lightly, generally involving input from a team of family members, doctors, and patients themselves (unless they are too young and/or too impaired to participate).
Because ECT is rarely done on children, you might think this issue doesn’t affect you personally. But it does. Underlying this debate is a critical question: Who should decide patient care: patients, their families and their doctors, or the state?
ECT is a completely legal treatment that has been endorsed by the American Psychiatric Association, the American Academy of Child and Adolescent Psychiatry, and the American Psychiatric Nurses Association – in fact, there isn’t a single professional group that opposes it.
Tell your representatives not to deny our most vulnerable citizens access to one of the most potent treatments in the psychiatric arsenal.
Amy S.F. Lutz has written about severe autism for many platforms, including Psychology Today and Slate. Her book, “Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children”, was published in 2014. She is the president of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled and a Ph.D. student in history and sociology of science at the University of Pennsylvania. She lives in Villanova with her husband and five children.