{"id":78285,"date":"2024-10-15T05:31:22","date_gmt":"2024-10-15T11:31:22","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=78285"},"modified":"2025-09-24T08:36:02","modified_gmt":"2025-09-24T14:36:02","slug":"from-desperation-to-hope-ect-transforms-life-for-teen-with-autism-and-catatonia","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/from-desperation-to-hope-ect-transforms-life-for-teen-with-autism-and-catatonia\/","title":{"rendered":"From desperation to hope: ECT transforms life for teen with autism and catatonia"},"content":{"rendered":"
<\/div>
\"Sean,
Roughly 10% of people with autism may also have catatonia, which can bring purposeless aggression, difficult transitions and \u201cshut-down\u201d nonresponsiveness. Sean Daley, here with his mom, Jo Daley, struggled for years until a proper diagnosis and electroconvulsive therapy (ECT) turned things around. Photo by Cyrus McCrimmon, for UCHealth.<\/figcaption><\/figure>\n

Jo Daley and Brendan Hackett have a story to tell. It focuses on their son Sean, who, despite being the tale\u2019s central character, can\u2019t tell it himself.<\/p>\n

They\u2019re sharing their story for one reason. They want those caring for loved ones with autism spectrum disorder (ASD<\/a>) to know that people with autism may also have catatonia.<\/a> They don\u2019t want others to struggle for years as Sean did before getting a concrete diagnosis and starting treatment. In Sean\u2019s case, he received life-changing electroconvulsive therapy (ECT<\/a>).<\/p>\n

Sean, 18, was diagnosed with autism at age 3 and has remained, as Hackett put it, \u201con the low-functioning end\u201d despite his intelligence. Years of in-home schooling centered on ABA therapy<\/a> 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.<\/p>\n

That changed in the fall of 2020. Sean\u2019s moods flipped from good to terrible with no obvious trigger in the months before his 15th<\/sup> 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.<\/p>\n

\u201cThe explanation was, oh, it\u2019s probably hormones,\u201d Sean’s dad said. \u201cThat\u2019s always tough on kids on the autism spectrum.\u201d<\/p>\n

Catatonia and autism<\/strong><\/h2>\n

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, \u201creally traumatic and scary.\u201d<\/p>\n

\"Sean,
Sean with his brother Jake. Photo by Cyrus McCrimmon, for UCHealth.<\/figcaption><\/figure>\n

In April 2021, Sean was admitted to Children\u2019s Hospital Colorado\u2019s inpatient psychiatry unit, where he stayed for a month. The providers diagnosed a mood disorder, prescribed lithium, and referred Sean to Evoke Behavioral Health\u2019s Severe Behavior Treatment Program, a day program in Denver\u2019s Highlands neighborhood.<\/p>\n

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.<\/p>\n

\u201cWe\u2019re on eggshells every day. We\u2019re repairing holes in our walls. We can\u2019t get babysitters, we can\u2019t leave the house,\u201d Daley recalled. \u201cAnd you\u2019re watching your child just sink into this dark abyss of a horrible life. And we\u2019re thinking, \u2018Is this his life? Like, is this the end?\u2019 It\u2019s heart-wrenching.\u201d<\/p>\n

In January of 2023, Sean\u2019s 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.<\/p>\n

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.<\/p>\n

It read like a case study of her own son: Hormonal trigger. Getting \u201cstuck\u201d and unable to complete tasks. Difficult transitions. Purposeless aggression. \u201cShut-down\u201d behaviors.<\/p>\n

Catatonia. That had to be it.<\/p>\n

A tricky diagnosis and ECT, a treatment whose mechanism remains mysterious<\/strong><\/h2>\n

Catatonia symptoms \u2013 broadly characterized by abnormal movements, behavior, and withdrawal \u2013 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\u2019t necessarily looking for it. But, one analysis found<\/a> that more than 10% of people with ASD also have catatonia.<\/p>\n

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.<\/p>\n

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 \u2013 they\u2019re 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.<\/p>\n

In a January 2024 meeting with the psychiatry team at Children\u2019s Hospital Colorado, Daley, Hackett, and Sean\u2019s primary therapist at Evoke, Berkeley Brown, presented their case, and the Children\u2019s team was persuaded. However, they cautioned that finding someone willing to perform ECT on a patient with Sean\u2019s volatility would be challenging.<\/p>\n

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\u2019s potential reaction to that was the chief concern.<\/p>\n

Daley was considering flying to a center in Boston and spending weeks there with Sean. Then, a Children\u2019s Hospital Colorado psychiatrist suggested trying Dr. Christopher James<\/a> at UCHealth University of Colorado Hospital<\/a> on the Anschutz Medical Campus<\/a>. He\u2019s 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.<\/p>\n

\"Dr.
Dr. Christopher James<\/figcaption><\/figure>\n

ECT can be a great thing, but it\u2019s not a sure thing<\/strong><\/h2>\n

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.<\/p>\n

\u201cAnd I just started crying,\u201d Daley said.<\/p>\n

\u201cA lot of people are told, \u2018No, we can\u2019t do that,\u2019\u201d James said. \u201cI try to build bridges as much as possible because it\u2019s really easy to say \u2018No\u2019 to these patients.\u201d<\/p>\n

The initial session was scheduled for March 18. James\u2019s staff was briefed: Don\u2019t 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.<\/p>\n

That evening, Daley and Hackett were sitting upstairs when the door opened. It was Sean, who hadn\u2019t 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 \u201cHi.\u201d<\/p>\n

\u201cWe\u2019re like, \u2018What is happening? Who is this kid?\u2019 The energy was night and day. He seemed so calm,\u201d Daley said.<\/p>\n

Two weeks into his three-times-a-week ECT sessions, Sean returned to Evoke. Brown, the therapist, called Daley later that day.<\/p>\n

\u201cEveryone here is in tears,\u201d Brown told her. Sean had said \u201chi\u201d that morning and had wanted to talk. He was interested in his academics, interacting with peers, and going out to the playground.<\/p>\n

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.<\/p>\n

\u201cWe all love treating him, so we\u2019re glad he\u2019s here,\u201d James said.<\/p>\n

\"Sean,
After just his second session of ECT for catatonia, Sean’s worst catatonic symptoms were gone. Photo by Cyrus McCrimmon, for UCHealth.<\/figcaption><\/figure>\n

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 \u2013 such as posing for photographs and saying \u201ccheese\u201d for a photographer.<\/p>\n

Daley and Hackett have been able to bring in a sitter and go on weekend trips. They\u2019ve brought Sean along to restaurants and even to a recent music festival.<\/p>\n

\u201cHe wasn\u2019t smiling for years,\u201d Daley said. \u201cHe\u2019s got his smile back.\u201d<\/p>\n

And they\u2019ve got their son back.<\/p>\n","protected":false},"excerpt":{"rendered":"

Jo Daley and Brendan Hackett have a story to tell. It focuses on their son Sean, who, despite being the tale\u2019s central character, can\u2019t tell it himself. They\u2019re 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 […]<\/p>\n","protected":false},"author":23,"featured_media":78287,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[9261,113,112,3654],"class_list":["post-78285","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-autism","tag-behavioral-health","tag-mental-health","tag-outpatient-psychiatric-services"],"acf":[],"yoast_head":"\nECT transforms life for teen with autism and catatonia - UCHealth Today<\/title>\n<meta name=\"description\" content=\"Catatonia is surprisingly common \u2013 and probably underdiagnosed \u2013 among people with autism. 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