Should Electroconvulsive Therapy Be an Option for Children with Severe Autism and Catatonia? These Families Say Yes

“I. Want.” A metallic voice bursts out of Peter’s padded iPad. “To. Eat.” The 26-year-old selects a picture on the app. Tap, click, tap, click: “A. Cheeseburger.” His mother, Susan, chuckles. Sixteen years ago, she couldn’t have imagined having this kind of conversation with her son.

Peter is unable to talk. Before learning how to use the iPad app at age 10, he communicated fluidly with his family through signs and gestures. He doesn’t have autism, but he displays some characteristics of severe autism because of a stroke he experienced while he was still in the womb. His motor skills and balance are also poor, while stroke-related cognitive and developmental issues kept his reading at a second grade level and made many activities of daily life impossible without help. But he was a very active little boy, his mom says, who loved swimming, kayaking and trips to the zoo, the library and restaurants with the family.

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Then, at 14, something went wrong. Peter suddenly began freezing up, sometimes for hours, unable to move. He would attempt to descend the stairs for breakfast and get stuck on top of them for eight hours, unable to drink, eat, sleep or go to the bathroom. Sometimes, his breathing would shut down and his limbs would turn blue. Peter’s life was like a tape no one knew how to play. It would pause, start again, without any trigger.

“He was going downhill very, very, very quickly,” said Susan. “None of his doctors could figure out what was going on.” 

It wasn’t until four months later that Peter was diagnosed with catatonia in May 2008 by Dr. Lee Wachtel of the Kennedy Krieger Institute, a Johns Hopkins affiliate in Baltimore. For 10 months, he was treated with various drugs and cocktails of medications for the rare disorder, which can cause people to bounce between extreme agitation and stupor, “until we couldn’t go up any higher on the doses,” Susan recalls. Wachtel recommended electroconvulsive therapy, or ECT, a treatment she had seen work on some of her catatonic patients. “We were definitely concerned. But at that point we understood also that we didn’t have any other choice,” said Susan.

Peter is now largely free of those frightening episodes, thanks to improvements in his condition that his family attributes to ECT, according to Susan, who asked that her and Peter’s last name be withheld to protect their privacy. Without the treatment, she said, “he would literally be a vegetable.”

What is catatonia?

A little-understood condition, catatonia has a wide range of alarming symptoms. On a video Susan recorded in 2019, Peter sits at the dining room table, his arm lying rigidly on the surface, his hand bent 90 degrees. His face is contorted; besides trembling, he is barely able to move. It looks like he’s had a stroke. Episodes such as this one occurred regularly before ECT; now they are rare.

Catatonia was historically associated with schizophrenia, but more recently it has been linked to other mental conditions as well, including mood disorders and autism spectrum disorder. During a catatonic episode, people may freeze for hours. Conversely, they can become severely agitated: poking their eyeballs, banging their head against hard surfaces, pulling their hair until their scalp bleeds and physically assaulting their caregivers. With few alternatives, some parents of minors experiencing catatonia sign consent forms for ECT, hoping the treatment will give their children some urgently needed relief.

Electroconvulsive therapy — better known as “shock therapy” — was discovered in the 1930s. In this therapy, a short electrical current is passed through the brain for a few seconds to trigger a brief grand mal seizure. The treatment’s mechanism of action remains murky, though recent research points to a number of biological effects, from the release of hormones to changes in the structure of the nervous system and neurons themselves. 

For decades, “shock therapy” was unpopular in the United States, especially since the treatment was often used on people against their will, sometimes as a means of control or punishment. It was used as a threat against mentally ill people in hospitals in the 1950s, and later forced on some gay men as part of involuntary psychiatric treatment aimed at making them heterosexual. The public’s revulsion toward ECT burgeoned with its portrayal in the 1975 film One Flew Over The Cuckoo’s Nest, adapted from the novel by Ken Kesey. In it, the lead character, a rebellious, high-spirited mental hospital patient played by Jack Nicholson was strapped down to undergo ECT as punishment and thrown into violent convulsions.

Jonathan Sadowsky, a historian of psychiatry who wrote a book on the history of ECT, notes that the movie was both “sensational” and “not completely unrealistic for the era it depicts, the 1950s.” He writes: “There is no question that ECT was benefiting patients then, but there is also a lot of evidence from that period showing that ECT, and the threat of it, were used in mental hospitals to control difficult patients and to maintain order on wards. ECT was also physically dangerous when first developed.”

In modern ECT, by contrast, anesthesia makes the procedure painless and muscle relaxants reduce the risks of seizure-related injury. About 100,000 Americans each year undergo it for severe, intractable depression and other ills. Celebrities such as the late Carrie Fisher and Kitty Dukakis have spoken publicly about ECT’s positive impact on their depression. What’s less known is that a small but increasing number of parents are turning to the treatment for their severely autistic children. 

ECT does not reverse autism, but these parents are desperately seeking relief from catatonia, which sometimes afflicts autistic children. Catatonia is usually treated with medications. But some patients, including children, don’t respond, and  ECT becomes  a last resort. The patients, some as young as 8 years old, typically receive the treatment as often as three times a week in acute phases to once every three weeks or less in maintenance phase. While children represent only a tiny fraction of those treated, their growing numbers attest to the modest popularization of the treatment. 

Peter’s family got their first glimpse of a new life for their son after he received ECT at the Center for Autism and Related Disorders across the street from Johns Hopkins, where Wachtel works. He received the treatments at Hopkins’ Brain Stimulation Suite, a set of three rooms on the building’s seventh floor.

Every other day, Peter would lie on a hospital bed, be put to sleep with an anesthetic and injected with a muscle relaxant. A maroon mouth guard prevented him from biting his tongue during the induced seizure. Electrodes were placed on the young man’s head, and the doctor would push the orange stimulus control button on a briefcase-sized device with a green power switch. A chart recorder monitored the seizure, which is generally only apparent by a slight movement of the feet. The machine would pulse for a few seconds. Then he’d be wheeled back to the recovery room to be monitored for 45 minutes until he woke up.

Tap, click, tap, click. “My brain doesn’t feel like mashed potatoes anymore,” said Peter’s metallic iPad voice after two ECT treatments. His parents were overjoyed. What they didn’t realize, however, was that this was going to be a lifelong treatment.

Peter’s treatments were progressively stretched out, from once every other day to once a week and eventually to once every three weeks. But ECT became the centerpiece of Susan and her husband’s lives. Travel dates? Let’s check the ECT schedule first. Send Peter to summer camp? If it didn’t interfere with ECT. Visit their newborn grandchild? If ECT allowed it. “It’s an enormous amount of effort,” said Susan.

She listed the price of each treatment — in the $1,000 range, and the half-day dedicated to driving Peter to the ECT suite and back. For the first five to seven years, Susan and her husband paid $350 out of pocket for each session. Their insurance now covers the whole bill, even as the cost has often climbed to more than $6,000 a session, according to Susan.

If any pill were as effective as ECT, Susan said, she’d pick the pill every time. “It’s a blessing,” she says, “but it’s a huge challenge.”

Worries about developing brains

ECT should not be confused with electric shock therapy, in which a painful electric shock is administered to deter aggressive or unwanted behavior in autistic children. This kind of “aversion therapy” is opposed by autism advocacy and human rights groups, who describe the technique as a form of torture.

But even using ECT on minors with autism has long been controversial. Even today, scientists can not say definitively how the treatment works. They do know, however, that it has an impact on memory and cognition. The effect on working memory and semantic memory — the ability to recall words, numbers and ideas — is transient, according to most studies, although deficits in autobiographical memory could be long-lasting. The threat is great enough to deter some psychiatrists from considering the treatment for minors.

Georgios Petrides, chair of psychiatry at Trinitas Regional Medical Center in New Jersey, is not among them. He has treated minors who have catatonia with ECT and done multiple studies and literature reviews involving ECT as a treatment for catatonia and other conditions. About parents who seek the treatment for their autistic children suffering from catatonia, he says: “I really admire them because they’re people who really have invested a lot of time and care in taking care of their children, and they’re usually people who have exhausted everything. And they have heard from other parents that this is an option and they want to investigate that. But they’re also people who are very strained because it’s so, so painful … to have children who will try to poke their eyes out” or try to maim themselves in other ways.

“The goal is not to make ECT popular; the goal is to serve our patients the best,” added Petrides, a former director of electroconvulsive therapy at New York’s Zucker Hillside Hospital. “I believe it’s really a human rights issue.” He argues that patients, in consultation with their doctors, should have the right to choose their treatments, and that ECT “should not be prohibited or banned just based on popularity or political interests.”

Still, some psychiatrists have their doubts about using it with minors.

Yanko Enamorado, a psychiatrist at Mount Sinai in Miami, works with children with severe autism and administers ECT to adults. But he has never given the treatment to a minor. “Children’s brains are developing, they’re blooming. I just don’t see a behavior that a child could have that will give grounds for me to give ECT,” he told me when we spoke several years ago. (He did not return recent calls for comment). 

“Maybe, maybe, maybe actually that’s the [answer], I don’t know. I’m not going to try it myself,” said Enamorado.

To Enamorado, ECT has remained a last resort treatment that should be used only after a strict cost-benefit analysis, especially for children who lack some cognitive abilities. 

A number of recent studies, however, argue that electroconvulsive therapy may hold benefits for adults, teens and children with severe autism and catatonia. Dozens of case studies dating back to 1999 recommend ECT as a possible way to treat children with catatonia, tics and self-injury associated with autism. ECT has been used to treat catatonia for some 80 years, and it can improve symptoms, according to a 2021 systematic review of 12 studies involving catatonia in autism published in European Psychiatry; two of the studies were of autistic children and teens. ECT was used in only 22 people out of 1,534 studied, with up to 100% of the subjects receiving benzodiazepines or antipsychotics. However, only ECT was found to be of benefit.

A 2021 article in Psychiatric Clinics of North America noted that although scientists don’t understand how ECT works to resolve catatonia, it “can safely and rapidly resolve catatonia in autism and should be considered promptly.”

But what do parents think? They’re at ground zero of caregiving, and many have desperately sought help for their kids’ self-harming behaviors. The following profiles offer a glimpse into the lives of three of these families.

Anthony and Arlene

Never mind the stripping, the spitting, the slapping, the striking, the splattering of excrement on the wall. Never mind the door locks, the alarm system, the plexiglass windows, and the security cameras — all intended to keep a young boy from hurting himself. What really plunged Arlene into despair was when her 6-year-old son, Anthony, tried to dive onto the highway from her moving vehicle. 

Arlene, who also asked to use first names only, recounted that fateful day. She had been summoned to pick her son up from school after he spat on another child and urinated in the school bus. She drove a rented car — her own was being repaired after she hit a garage pole when Anthony was having a fit. Suddenly, the hum of the highway grew louder. Anthony had opened the car door and unbuckled himself. He was about to jump. Arlene grabbed him with one hand and tried to steer with the other. Despite her hypervigilance — the trademark of most parents of children with severe autism — she had forgotten to check the child safety locks. The car crashed into a guardrail. 

A police officer stopped to inquire about the accident. “My son has autism,” she told him. “I was trying to keep him safe.” 

When they got home, she collapsed, sobbing, into her husband’s arms. “That was the end of our rope,” Arlene said. Her husband was firm: “We can’t keep him safe anymore,” he said. “We need to take him to the hospital.” 

“That broke my heart,” Arlene said. But there didn’t seem to be another choice. 

Anthony was admitted for evaluation to Bradley Hospital near their home in Rhode Island. He was put on medications, an option his parents had opposed for years. He was hospitalized four times from the age of 6 to 9,  then moved out of his childhood home to the New England Center for Children (NECC). He would never live with his family again.  

At NECC, Anthony required up to four people to keep him safe. He wore rigid arm restraints, a helmet and a wetsuit – but he did not get better. He went from 26 aggressive acts a day when he was admitted in 2011 to 200 to 500 a day in 2015, according to his medical records. He injured himself 100 to 250 times a week, banging his head against the floor, the wall, his hand or his padded iPad. (Head banging is one of the most common forms of self-injury among patients with severe autism.) 

In August 2017, Anthony moved to Melmark New England, a Massachusetts-based school for children with special needs an hour’s drive from his parents’ home. Arlene and her husband visited every other week and called frequently. At first, the behavior of the 15-year-old improved. He learned to communicate with an iPad and perform some simple chores such as loading the dishwasher, sweeping the table, preparing a bagel and eventually going to the grocery store with his mother. 

But, in 2021, Anthony’s self-injurious behaviors escalated. He banged his head so often it swelled, requiring frequent visits to the emergency room. “The first time they called me and said he had swelling in his head, and like — Oh, my God — all I could think of was swelling in the brain and coma,” said Arlene. 

She and her husband were at a loss. Their child had been medicated for nine years, and his symptoms were worsening. 

One thing could help, the director of his school said — a controversial treatment that seemed to work in similar cases: ECT. The family felt renewed hope, but hospitals refused to take Anthony as a patient. He was too aggressive, a symptom of the condition ECT was meant to treat. His psychiatrist seemed lukewarm about the treatment as well. “I don’t think he really believes in that, and wasn’t really big on it,” said Arlene. 

After months of searching for an ECT provider, Arlene and her husband gave up on the idea and agreed to try some new medications. 

A year and half later, he had not progressed. In fact, it emerged that he’d been having undetected seizures for years, according to a Boston-based neurologist. Anthony now wears a leg brace and a compression sleeve on his arm and has neurological damage on one side of his brain from his head-banging despite the helmet he rarely takes off. 

“I feel like we went backwards,” said Arlene. “I think about the future – what is it going to look like for him? He’s getting older now. He’s going to be 22, he’s a man, you know. What kind of future is he going to have, especially when I’m not around to advocate for him?”

Peter and Susan

In Maryland, Susan and her husband had become accustomed to Peter’s ECT schedule, but with that came the realization that time itself threatened Peter’s care. They were aging. Who would drive him to the ECT suite when they no longer could? She and her husband decided to move. In August 2020, they bought a house in Michigan, where their daughter lives, and began the dreadful bureaucratic process that would allow Peter to receive ECT at the University of Michigan. They had to ask for guardianship, transfer Peter’s health insurance, and find an ECT provider. It took four months, during which time Susan had to keep driving Peter to Johns Hopkins, a 10-hour drive from their new home.

Leaving Hopkins, where he’d been treated for 10 years, was hard on Peter. Posturing — holding his hands at an angle or arching his back while sitting — became more frequent. The treatment had to be increased from once every three weeks to every other week.

Since February 2009, Peter has received more than 300 ECT treatments. It helps him, but it’s not a cure. “It’s an art, not a science,” said Susan. “It takes a lot of trial and error to figure out.”

A lot of people don’t understand ECT, she says. They think it’s “torturous” and “inhumane” — but “they have no idea what they’re talking about. And it irritates me to see that people can actually, with no knowledge, try and take this away from people like us, or people like Peter. It’s a lifesaver for him.” 

Jonah and Amy

Amy Lutz and her husband were contemplating lifelong institutionalization for their 9-year-old son, Jonah, when their psychiatrist suggested ECT. He had had violent outbursts and had been medicated since the age of 5. He’d turned 9 in a locked unit at Kennedy Krieger’s Center for Autism and Related Disorders in Baltimore, where he spent a year.

“My big anxiety was what if this didn’t work,” Lutz said. “This was the last thing we had to try. And if it didn’t help, you know, Jonah was going to be condemned to this life of terrible suffering.” She started documenting everything in a journal. “I didn’t get one single skeptical comment from anybody who knew us personally,” said Amy of the treatment. “When you talk about stigma, it’s not usually amongst the families.”

Jonah responded well to ECT. He was discharged and moved to a group home. For the first time in years, he could partake in family outings. He attended their annual Hanukkah party in New Jersey, and a dolphin therapy program in Florida. “Our lives opened up so much,” she said. “Why don’t people know about this?”  

Lutz, who teaches on the history of medicine and bioethics at the University of Pennsylvania, compiled her recollections in a book published in 2014: Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children. She was afraid of the potential backlash, though, and asked her husband, Andy, to remove their phone number and address from public listings. “I was really afraid — here I was advocating shocking the brain of my 11-year-old child — that it was going to be hugely controversial.” 

To her surprise, it was a non-issue. The reception to the book was positive, and she started receiving emails from parents considering ECT for their child. “When they read my book, they’re like: ‘I’m not alone,’” she said. “[It] gives some hope that this doesn’t have to be forever.”

There was some backlash from parents of neurodivergent children. “The fault line is between parents of severely autistic kids, and then these very mildly affected autistic adults, who identify with the neurodiversity movement,” Lutz said. But this debate did not pertain to ECT per se. She has written several stories and two other books about her experiences parenting a child with severe nonverbal autism. 

Lutz regularly debates with neurodiversity advocates online. Someone will make a comment: She’s the one who shocks her kid. “But these are comments coming from people for whom ECT would never be indicated,” she said. “It always astounds me the logic: ‘I don’t want this so nobody should have this.’” 

One thing Lutz has noticed: ECT has become more normalized over the past decade. More people share positive experiences online. “People understand that if you could treat extreme psychopathology with hug therapy, we would, you know? It’s not that easy. I wish it was.”