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Each Day I Like It Better

Autism, ECT, and the Treatment of Our Most Impaired Children

Amy Lutz

Publication Year: 2014

In the fall of 2009, Amy Lutz and her husband, Andy, struggled with one of the worst decisions parents could possibly face: whether they could safely keep their autistic ten-year-old son, Jonah, at home any longer. Multiple medication trials, a long procession of behavior modification strategies, and even an almost year-long hospitalization had all failed to control his violent rages. Desperate to stop the attacks that endangered family members, caregivers, and even Jonah himself, Amy and Andy decided to try the controversial procedure of electroconvulsive therapy or ECT. Over the last three years, Jonah has received 136 treatments. His aggression has greatly diminished, and for the first time Jonah, now fourteen, is moving to a less restricted school.

Each Day I Like It Better recounts the journeys of Jonah and seven other children and their families (interviewed by the author) in their quests for appropriate educational placements and therapeutic interventions. The author describes their varied, but mostly successful, experiences with ECT.

A survey of research on pediatric ECT is incorporated into the narrative, and a foreword by child psychiatrist Dirk Dhossche and ECT researcher and practitioner Charles Kellner explains how ECT works, the side effects patients may experience, and its current use in the treatment of autism, catatonia, and violent behavior in children.

Published by: Vanderbilt University Press

Title Page, Copyright Page

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pp. i-vi

Contents

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pp. vii-x

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Foreword

Charles Kellner, MD, and Dirk Dhossche, MD

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pp. xi-xvi

“You don’t still use ECT, and surely not in children, do you?” is the first question often blurted out by parents, medical professionals, and lay people when they hear that electroconvulsive therapy (ECT) is recommended as a potential treatment for a child or adolescent...

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1. Jonah, 2009: The Debate on Cognitive Side Effects

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pp. 1-21

Crisis, I’ve discovered, is a relative term. When the care manager who coordinates the services my autistic ten-year-old son, Jonah, gets from the State of Pennsylvania asks me if I’m in crisis, I’m not sure how to answer. Is it a crisis if your son has just attacked your tiny Thai au pair...

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2. Matthew

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pp. 22-30

Stepping into Tom and Cheryl’s minivan was déjà vu for me: Sesame Street music on the CD player, the Kennedy Krieger Institute looming behind us, and a pale, dark-haired boy under a blanket in the back seat, snuggled next to his mother. It could have been me...

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3. Jonah, January-March 2010: The Efficacy Studies

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pp. 31-43

We wait. We wait through the long Christmas break, with no school and no aides. Andy had intended to take this week off, but his fund is busier than anticipated and he can only get away for a few half-days. I know all the museums and indoor play spaces will be packed because...

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4. Paul

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pp. 44-51

In January 1993, Teri underwent amniocentesis to check her four-month-old fetus for genetic defects. Her three-year-old daughter, Amanda, had been born with tuberous sclerosis (TSC), which causes the growth of benign tumors on the brain, heart, kidneys...

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5. Jonah, March 2010: ECT Begins

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pp. 52-66

Andy and I pick Jonah up at school at eleven for the twohour- plus drive to New York. Jonah’s first ECT isn’t scheduled until tomorrow morning, but first he has to meet with a child psychiatrist at Mount Sinai, Dr. Alex Kolevzon, to satisfy New York State requirements...

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6. Gary and David

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pp. 67-75

I consider myself to have a finely tuned autism radar: if there’s an autistic kid in the room, I can pick him out in half a second. But after meeting Gary and David (twenty-five), I found myself wondering if, in fact, I would have pegged them as being on the spectrum...

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7. Jonah, March–April 2010: One Step Forward, Two Steps Back

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pp. 76-96

After another terrible night’s sleep, my alarm goes off at four thirty a.m. This time I have new culprits on which to blame my insomnia: anxiety about sleeping through the alarm, driving up to Mount Sinai with Jonah by myself since Andy is still in New York, or...

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8. Sam

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pp. 97-105

On an ordinary day in June 2011, I met fifteen-year-old Sam and his mother, Susan, for coffee. Sam is an ordinary boy; a little brighter and a lot less contemptuous of adults than I, with my limited teenage experience, was expecting, but he liked ordinary things...

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9. Jonah, April 2010: Maintenance Begins

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pp. 106-125

About 6:45, we head uptown for the last in Jonah’s acute series of ECT. Liz isn’t there, which saddens me, because I thought I’d have a chance to say goodbye and thank her for all her many kindnesses. The entire staff at Mount Sinai has been unbelievably warm...

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10. Alex

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pp. 126-138

I knew, intellectually, that ECT didn’t work for everybody. I knew it wasn’t a magic bullet, a miracle—even if I may have used those words in private conversations to describe Jonah’s transformation. But I don’t think I really believed it until ECT failed to help a...

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11. Jonah, August–September 2010: How Does ECT Work?

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pp. 139-149

“Jonah, stop it!” Marina commands from the last row of our fifteen-person passenger van. “We do not hit!” My eyes dart to the rearview mirror, trying to assess the situation while driving sixty-five miles per hour up the Atlantic City Expressway...

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12. John

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pp. 150-159

No pseudonyms are used in this chapter. I’m so grateful to the Dinda family for allowing me to identify them by name; otherwise, it would be impossible to describe that gut-wrenching moment in August 2010 when I opened an email from...

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13. The ECT Controversy

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pp. 160-174

It’s amazing how fast we re-normalize. For more than eight years we were used to our son attacking us, sometimes several times a day; now, seven months after we started ECT, we’re used to the opposite. When, as happens occasionally—maybe a couple of times a...

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Epilogue, January 26, 2011: The FDA Hearing

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pp. 175-184

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

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Afterword, May 16, 2013

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pp. 185-188

What comes after epilogue: postscript, coda, addendum? Because Jonah’s story is of course ongoing, and will continue on—I hope for many, many years. As this book goes to press, Jonah is fourteen years old. He has been receiving ECT for just over three years and has gotten approximately...

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Acknowledgments

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pp. 189-190

If it takes a village to raise a typical child, it takes a city to raise one as challenging as Jonah was before his mood was stabilized with ECT. I am so grateful to the incredible support system that got us through those desperate years: Keri and Matty—I honestly don’t know how I would have made it...

Notes

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pp. 191-196

Index

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pp. 197-200


E-ISBN-13: 9780826519771
E-ISBN-10: 0826519776

Publication Year: 2014