In lieu of an abstract, here is a brief excerpt of the content:

175 Epilogue, January 26, 2011 The FDA Hearing Thank you, members of the panel. My name is Amy Lutz. 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 paused to hold up the bloody pictures of Jonah I had taken following his discharge from KKI, when the state insurance company had failed to deliver even half the hours of home support its own experts had determined Jonah would need to maintain the gains he had made on the NBU—only these prints of the photos were three feet long and two feet high. I wanted to make sure that every member of the Neuro­ logical Devices Panel of the Medical Devices Advisory Committee of the FDA got a good look at those disturbing images. 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. Because 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 six years old, and by the time he was ten—when these pictures were taken—his almost daily attacks left me, his teachers, and his aides bruised, scratched, and bitten. Behind the lectern, I could feel my knees trembling. Somewhere deep inside, the debate champion I had been once upon a time mocked my nervousness. When I was in college, I had gotten up almost every weekend to argue, often about topics I knew nothing about, sometimes in front of hundreds of spectators. But there was so much more at stake this time than whether I would take home another silver plate—this panel would advise the FDA whether ECT machines should be reclassified as Class II medical devices. WetriedeverythingtocontrolJonah’saggression,includingeveryalternative treatment ever promoted by the autism community: a ­ gluten- and Each Day I Like It Better 176 casein-free diet, vitamin cocktails, B12 injections, auditory integration training, hyperbaric oxygen therapy. When none of these helped, we tried pharmacological interventions: antipsychotics, antidepressants, betablockers , anticonvulsants, lithium, stimulants. During an almost yearlong 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 of 2009, Jonah threw a tantrum in the car, lashing out at his eighty-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 ten, Jonah was already over one hundred pounds, and puberty loomed 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 nineteen-year-old autistic son. It hadn’t been easy to get a spot to testify. Despite my intense interest in ECT, I only found out about the meeting less than two weeks before, when a friend sent me the link to an article in The Wall Street Journal that vaguely referred to an upcoming FDA hearing. A search on the FDA website turned up the public docket—along with the deadline to apply to speak at the meeting, which had passed a few days earlier. I called and emailed the contact person, trying my best to sound calm and rational as I explained on his voicemail how imperative it was that the panel hear about Jonah and the other kids I’d met whose quality of life depended solely on their access to ECT. I was sympathetic to this poor public servant, besieged—or so I imagined—by hysterical callers, such as those who left comments in the electronic docket calling ECT “draconian,” “cruel,” and “unethical ,” similar to “forced...

Share