Amy Lutz presented to the U.S. Food and Drug Administration Neurological Devices Panel examining the reclassification of electroconvulsive therapy (ECT) devices on January 27, 2011. These are her remarks as published in the public record of the meeting.
Thank you, members of the Panel. My name is Amy Lutz, and my son, Jonah, suffers from autism and rapid cycling bipolar disorder. Until last March, he was plagued by frequent, unpredictable, and violent rages during which he would pound himself in the face like this until he looked like this. I’m showing you these pictures because I need you to understand the state of crisis we lived in for the better part of a decade, and even worse than what he would do to himself was what Jonah would do to others when he was in one of these states. He broke a teacher’s nose when he was 6 years old, and by the time he was 10, when those pictures were taken, his almost daily attacks left me, his teachers, and his aides bruised, scratched, and bitten.
We tried everything to control Jonah’s aggression, including almost every alternative treatment ever popularized by the autism community: gluten and casein free diets, vitamin cocktails, B12 injections, auditory integration training, hyperbaric oxygen therapy. When none of these helped, we tried pharmacological intervention: antipsychotics, antidepressants, beta blockers, anticonvulsants, lithium, stimulants. During an almost year-long hospitalization at the Kennedy Krieger Institute, Jonah was briefly stabilized on a combination of lithium and Abilify, but only a few weeks after he came home, the behaviors returned, and less than a year after discharge, they were worse than ever.
These fits came upon him under any and all circumstances, while he was doing schoolwork, eating meals, even watching his favorite videos. In October 2009, Jonah threw a tantrum in the car lashing out at his 80-year-old grandfather who was driving. While trying to restrain Jonah in the confines of our minivan, my husband accidentally broke Jonah’s arm.
We were faced with the crushing realization that it was no longer safe to keep Jonah at home, not for him and not for his four younger siblings. At 10, Jonah was already over 100 pounds, and puberty loomed right around the corner, a time when the violent behavior of autistic boys typically grows much worse. I didn’t want to imagine what much worse would look like for Jonah, but I couldn’t stop thinking about Kent State Professor Trudy Steuernagel who was beaten to death in 2009 by her 19-year-old autistic son.
But we didn’t need to place Jonah in a residential facility after all. In March 2010, we decided to try ECT because we knew it had been used successfully at Kennedy Krieger on kids with dangerous behaviors who hadn’t responded to medication. Less than a month later, Jonah’s aggression was almost completely gone. Gone. And ECT stopped his rages without any of the personality changes or cognitive impairments you’ve heard a lot about during this hearing. Quite the opposite. According to Jonah’s school data, before ECT, he acquired an average of seven new skills per month. In December 2010, he acquired 52 new skills.
And Jonah isn’t alone. There’s a growing group of patients whose quality of life depends exclusively on their access to ECT, developmentally delayed kids and teens who suffer from aggression, self-injury, and catatonia. I met several of these families over the past year, including a 14-year-old autistic boy who was self-injurious — he detached his own retinas twice — as well as a 16-year-old born with half a cerebellum due to an in utero stroke who vacillated between periods of uncontrollable rage and catatonic stupor during which he would remain frozen, unable to eat, toilet, or communicate for up to eight days at a time. ECT resolved the extreme behaviors of both those boys as well as those in other cases reported in the psychiatric literature by doctors at Kennedy Krieger and the University of Michigan among other places. In fact, Jonah’s case was just published in the European Journal of Child and Adolescent Psychiatry.
You have heard people get up and say that ECT doesn’t have any long-term benefit. That’s because ECT is, like dialysis, a treatment, not a cure. Jonah and his terribly affected peers need maintenance ECT to keep their symptoms at bay, which is why I drove eight hours through blinding snow to implore you to reclassify ECT machines as Class II medical devices and not to make any decisions that might make ECT less accessible for these children who need it so desperately.
What will happen if they can’t get ECT? Well, the boy who detached his retinas would surely blind himself. The catatonic teen would end up on a feeding tube, and Jonah, well, Jonah would end up physically or chemically restrained on a locked ward instead of where he is now, home, in school, out in the community, enjoying just like my four other children a rich, happy, exciting life. This is Jonah now.
Thank you very much.