Jo Daley and Brendan Hackett have a story to tell. It focuses on their son Sean, who, despite being the tale’s central character, can’t tell it himself.
They’re sharing their story for one reason. They want those caring for loved ones with autism spectrum disorder (ASD) to know that people with autism may also have catatonia. They don’t want others to struggle for years as Sean did before getting a concrete diagnosis and starting treatment. In Sean’s case, he received life-changing electroconvulsive therapy (ECT).
Sean, 18, was diagnosed with autism at age 3 and has remained, as Hackett put it, “on the low-functioning end” despite his intelligence. Years of in-home schooling centered on ABA therapy helped him verbalize his wants and needs, behave appropriately, and pick up academic skills. Sean was generally sweet and kind, open to outings, and a loving presence in the lives of Daley, Hackett, and his older brother Jake, 23.
That changed in the fall of 2020. Sean’s moods flipped from good to terrible with no obvious trigger in the months before his 15th birthday. He would close his eyes, cover them with his hands, and rock back and forth, unresponsive to communication or coaxing. It got worse as weeks passed, with Sean punching and kicking holes in walls, holding strange positions for hours at a time, withdrawing, getting stuck, being unresponsive. His parents sought medical advice. It didn’t help.
“The explanation was, oh, it’s probably hormones,” Sean’s dad said. “That’s always tough on kids on the autism spectrum.”
Catatonia and autism
Sean’s doctors and therapists adjusted his medications. His mom bought a treadmill so her son could burn some energy. Neither helped. Often, Sean woke up in the middle of the night stomping, kicking, punching walls. It was, as Daley put it, “really traumatic and scary.”
In April 2021, Sean was admitted to Children’s Hospital Colorado’s inpatient psychiatry unit, where he stayed for a month. The providers diagnosed a mood disorder, prescribed lithium, and referred Sean to Evoke Behavioral Health’s Severe Behavior Treatment Program, a day program in Denver’s Highlands neighborhood.
For the next year and a half, Sean continued to slide. At Evoke, he ended up increasingly isolated and incapable of doing educational or other activities. The unprovoked, violent outbursts continued. Jake, who spent time working at Evoke during those months, learned restraint techniques. He had to use them on his brother.
“We’re on eggshells every day. We’re repairing holes in our walls. We can’t get babysitters, we can’t leave the house,” Daley recalled. “And you’re watching your child just sink into this dark abyss of a horrible life. And we’re thinking, ‘Is this his life? Like, is this the end?’ It’s heart-wrenching.”
In January of 2023, Sean’s attacks on the IntelliRide drivers who brought him to and from Evoke ended that service. He spent hours rocking with eyes covered, distressed, impenetrable, immovable. By that April, he was back in the Children’s Hospital Colorado inpatient psychiatric unit, this time for three weeks.
Hackett, a high school librarian, drove Sean to Evoke that summer, but when school started again, the family needed a way to get Sean across town from their southeast Denver home. They reached out to Denver Public Schools. Sheri Katzman, a psychologist and autism support specialist with the school district, was part of a team sent to observe Sean at Evoke. She suggested that Sean might have catatonia, and she sent Daley a document describing signs of it.
It read like a case study of her own son: Hormonal trigger. Getting “stuck” and unable to complete tasks. Difficult transitions. Purposeless aggression. “Shut-down” behaviors.
Catatonia. That had to be it.
A tricky diagnosis and ECT, a treatment whose mechanism remains mysterious
Catatonia symptoms – broadly characterized by abnormal movements, behavior, and withdrawal – can overlap with those of autism. That makes it particularly hard to diagnose in the ASD population. Catatonia is most frequently seen among mood disorder patients, so autism caregivers aren’t necessarily looking for it. But, one analysis found that more than 10% of people with ASD also have catatonia.
Now, it was a question of treatment. While there were no guarantees, two therapies have been shown to have an effect on catatonia: lorazepam, an anti-anxiety medication, and a series of electroconvulsive therapy sessions.
This is not the ECT of yesteryear. The technology has advanced such that minimal voltage induces a current finely calibrated to induce a brief, controlled seizure in a patient under short-term anesthesia – they’re unconscious for less than 10 minutes, typically. Why it works remains unknown. But it works for about 80% of patients, many of them with severe depression and schizophrenia that otherwise resisted treatment.
In a January 2024 meeting with the psychiatry team at Children’s Hospital Colorado, Daley, Hackett, and Sean’s primary therapist at Evoke, Berkeley Brown, presented their case, and the Children’s team was persuaded. However, they cautioned that finding someone willing to perform ECT on a patient with Sean’s volatility would be challenging.
They turned out to be right. Three hospitals told Daley that Sean was too high-risk. The procedure involves a short-term general anesthetic, and that involves a needle poke. Sean’s potential reaction to that was the chief concern.
Daley was considering flying to a center in Boston and spending weeks there with Sean. Then, a Children’s Hospital Colorado psychiatrist suggested trying Dr. Christopher James at UCHealth University of Colorado Hospital on the Anschutz Medical Campus. He’s the medical director of the UCHealth Behavioral Health Unit at the hospital and a senior instructor in psychiatry with the University of Colorado School of Medicine.
ECT can be a great thing, but it’s not a sure thing
In March, James met with Daley as Sean rocked and held his head in his hands with Jake at his side. Sean presented a risk, but James felt it was a manageable one given the staffing and expertise available in the UCHealth Behavioral Health Unit and, more broadly, at a major academic medical center. He agreed to try ECT with Sean.
“And I just started crying,” Daley said.
“A lot of people are told, ‘No, we can’t do that,’” James said. “I try to build bridges as much as possible because it’s really easy to say ‘No’ to these patients.”
The initial session was scheduled for March 18. James’s staff was briefed: Don’t address Sean directly. No eye contact. Project calm. Several staff members helped keep Sean calm as the IV went in and his treatment began. At the second session two days later, same story. In less than 10 minutes, the session was over and the family headed back home.
That evening, Daley and Hackett were sitting upstairs when the door opened. It was Sean, who hadn’t climbed the stairs in a year. He smiled, walked over to them, and joined them on the couch. For the first time in over a year, he initiated eye contact and said “Hi.”
“We’re like, ‘What is happening? Who is this kid?’ The energy was night and day. He seemed so calm,” Daley said.
Two weeks into his three-times-a-week ECT sessions, Sean returned to Evoke. Brown, the therapist, called Daley later that day.
“Everyone here is in tears,” Brown told her. Sean had said “hi” that morning and had wanted to talk. He was interested in his academics, interacting with peers, and going out to the playground.
Sean did three ECT sessions a week for several weeks, tapering to twice a week from late May to late June, and he has been doing one session a week since then. He also takes a 9-milligram dose of lorazepam.
“We all love treating him, so we’re glad he’s here,” James said.
The violent episodes ceased after that second ECT session, and Sean’s verbal skills have returned. He is again curious, listening intently through a kitchen window as Daley and Hackett recount his story on the back patio. He accepts direction – such as posing for photographs and saying “cheese” for a photographer.
Daley and Hackett have been able to bring in a sitter and go on weekend trips. They’ve brought Sean along to restaurants and even to a recent music festival.
“He wasn’t smiling for years,” Daley said. “He’s got his smile back.”
And they’ve got their son back.