When I tell people about the electroconvulsive therapy my autistic 15-year-old son Jonah has been getting for the past four years, the response has been ... surprise, certainly. Curiosity. Interest. No horror, no judgment. But that’s to be expected from those close to my family: They know we spent the better part of a decade struggling to manage Jonah’s aggressive and self-injurious behaviors. Countless therapies, behavior plans, medication trials, and even an almost yearlong hospitalization at one of the nation’s premier facilities failed to stop his frequent, intense, and unpredictable rages.
My friends, like most people, originally knew little about ECT beyond the brutal depiction in One Flew Over the Cuckoo’s Nest, but there was no arguing with the results they saw. The boy who broke a teacher’s nose when he was in kindergarten, who left us, his aides, and his teachers bruised, bitten, and scratched—that boy is now tubing with his brother and sisters, riding a tandem bike, and studying Hebrew. The boy who could only be taken out in the community by his father because he was the only one who could still physically manage Jonah’s rages, flew with just me and one of his sisters to Florida for a week at a dolphin therapy program. The transformation has been dramatic, conclusive, and celebrated by all who care about my family.
Now that my book Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children is being published, I’m expecting the reaction to be considerably less benign. In the years I’ve spent researching ECT—first when we decided to pursue it for Jonah and later as I wrote about our story and the experiences of other families—I’ve tried to figure out exactly why it’s so controversial. I’ve been unable to come up with a satisfying answer. The inaccurate but persistent portrayal of ECT in the media and pop culture as a sadistic, soul-crushing punishment obviously contributes.
Those preconceptions have been reinforced by accounts of some former patients who report losing years of memories following ECT. This is a terrifying prospect, which is doubtlessly why memory loss has been the focus of much research (PubMed lists more than 600 citations). It’s a muddy issue because psychiatric illness, the drugs prescribed to treat it, and ECT can all affect memory, but the findings from studies around the world have been remarkably consistent: If memory loss occurs, it is generally transient and confined to the time immediately surrounding the acute course of treatment. In other words, patients can expect cognitive side effects from ECT similar to those they might experience following other common medical interventions, such as chemotherapy, heart surgery, and anti-seizure regimens.
The response rate for ECT is unparalleled: Approximately 80 percent of patients with major depression, the most common illness for which ECT is indicated, are helped, compared with less than 30 percent whose symptoms remit after eight weeks of antidepressants. Study the data, and it becomes clear why an estimated 100,000 Americans receive ECT every year to treat incapacitating conditions such as severe mood disorders, schizophrenia, catatonia, neuroleptic malignant syndrome, and Parkinson’s disease.
What most concerned me and other parents I know who pursued this treatment for our children wasn’t the risk of getting ECT. The antipsychotics typically prescribed to kids like Jonah as a first-line treatment for dangerous behaviors come with truly scary and sometimes permanent side effects, including dystonia, tardive dyskinesia, and neuroleptic malignant syndrome. More than 200 kids have died from complications from taking antipsychotics, but not one child has died from ECT since its first use in the pediatric population in the 1940s. No, it was the risks of not getting ECT that kept us up at night: blindness and brain damage from self-inflicted blows to the head, significant injuries to family members and caregivers, physical and chemical restraint in residential placements.
“Without ECT, Brandon would be in an institution, or maybe not even alive,” said Kate, the mother of a 15-year-old son with nonverbal autism and a history of severely self-injurious behavior. I met Kate and Brandon after I had finished my book, so their story isn’t included in it—but I didn’t have room to include all the families with similar stories. Violent behaviors represent a huge problem in the autism community. A 2013 study in Research in Autism Spectrum Disorders found that more than half of autistic kids exhibit aggressive behavior.
When he was 11 years old, Brandon spent nine months at an inpatient unit that treats only children and adolescents with developmental disability and dangerous behaviors. Nothing else had stopped his constant self-injurious behavior, or SIB, which occurred at a rate of 100 blows to the head, bites to the arm, and violent pinches to the leg every hour. Not the special diets and supplements parents typically try first because they seem safe and easy, not the psychotropics that 64 percent of autistic children take, not countless medication trials. The only way Brandon’s doctors found to control the ceaseless SIB was to fit him with arm splints that physically prevented him from bending his arms and hitting himself in the head.