By Amy S.F. Lutz
hen 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 withmajor depression, the most common illness for which ECT is indicated, are helped, compared with less than 30 percent whose symptoms remit after eight weeks ofantidepressants. Study the data, and it becomes clear why an estimated 100,000 Americans receive ECT every year to treat incapacitating conditions such as severemood disorders, schizophrenia, catatonia, neuroleptic malignant syndrome, andParkinson’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.
Nine months of intense treatment that targeted the SIB from both pharmacological and behavioral angles failed to reduce it enough to safely remove the splints. When he was discharged, Brandon still had them. Kate was devastated. “When he came home like that, I thought he would be in arm splints for the rest of his life,” she told me.
A few weeks later Kate heard about ECT from a client in an exercise class she was teaching who knew about Brandon’s situation. Three months after he started ECT, Brandon’s arm splints came off. Now, three years later, they are still off. Brandon’s rate of SIB dropped by 90 percent, and the residual behaviors are much less intense. There is no head banging, no more pinching. “We patched all the holes in the walls, and he hasn’t made another one since,” Kate said.
The decrease in SIB was accompanied by an increase in academic performance—which reflects the consistent finding in the literature that patients with severe psychiatric illness have improved cognitive functions following ECT. Brandon is learning to read and do basic math. And even more importantly, his communication has improved. “Before ECT, he had 50 signs,” Kate said. “Now, his signs have quadrupled and he strings them together.” She dismissed a common misperception about ECT: “Brandon isn’t a zombie, exactly the opposite. He’s more alert and happy. He’s finally come back to life.”
The optimist in me hopes that those who lobby to ban ECT just don’t know there are kids out there like Brandon, Jonah, the profoundly ill adolescents in my book, and so many others whose quality of life depends on regular access to ECT. They don’t realize that autistic individuals frequently suffer co-morbid conditions that can cause intense rages over which they have no control, such as bipolar disorder (with which Jonah was diagnosed when he was 9) and catatonia.
Now 27, Julia has been getting ECT for almost two years, and the SIB her parents desperately tried to stop for a quarter of a century is largely gone. Instead of being confined to her home because she couldn’t be safely managed in the community, she is able to enjoy her favorite activities, like nature walks, outdoor concerts, and swimming.
Julia’s parents don’t spend too much time wondering how their daughter’s life might have turned out differently if they had found ECT earlier—20 years ago, the dramatic effects ECT can have in kids like Julia had yet to be featured in the psychiatric literature. Now ECT is getting serious attention as a treatment for children with developmental delay and dangerous behaviors. There are numerous published casereports from hospitals around the world, and Neera Ghaziuddin and Garry Walter’s 2013 academic text Electroconvulsive Therapy in Children and Adolescents includes chapters on the treatment of autistic catatonia and self-injury with ECT. In January, Ricki Robinson, a developmental pediatrician and professor of pediatrics at the University of Southern California, recommended ECT as a treatment for severe cases of autistic catatonia in a guest post on the Autism Speaks blog, which is about as mainstream as it gets in the autism community. Last month, a Virginia television station featured an autistic 25-year-old man who is receiving ECT for extreme SIB.
As awareness increases, however, the ethical debate over the use of ECT in this population is likely to intensify—even if for us, the parents of children whose lives have been transformed, there is nothing to debate. Ethics don’t exist in a vacuum; any discussion of the ethics of giving ECT must be compared to the ethics of withholding an evidence-based treatment from those who are likely to benefit from it, forcing families to live with the constant threat of significant injury to their children or to others, and condemning kids with an already limited future to life on a locked ward. Without a doubt, it would be better if yoga and fish oil could control the underlying neurological impairments that drive these aggressive and self-injurious behaviors, but they can’t. And these profoundly challenged, complex kids deserve every weapon in the medical arsenal that can help them.