The Autism Breakthrough That Politics Could Stop Cold
From Nashville Banner, July 1, 2025

The GOP’s Big Beautiful Bill stands to radically change American life, and federal grant cuts have already rocked research institutes — this is the story of one Vanderbilt psychiatrist and one Nashville family who are already contending with the country’s new scientific reality 

Wendy Stotsenburg didn’t know what was happening to her son. Her second-born, Lukas, had been diagnosed with profound autism when he was 10 years old. He could neither read nor write nor carry on a conversation. But, in the five years since his diagnosis, he had made encouraging progress. Thanks to the help of Wendy and her husband, Rod, and physicians near their home in Old Hickory, Lukas could eat with utensils and say simple phrases, such as “juice box, please.” And, most important, he was happy. He loved school and watching “Sesame Street.” In 2019, Wendy had to leave her corporate marketing job after she was unable to find an after-school caretaker for Lukas. Still, despite such occasional headaches, their family had fallen into a comfortable rhythm. 

Then, in March of 2020, the COVID-19 pandemic forced Lukas’s school to go remote. Stuck at home, he spent hours pacing between the kitchen and the dining room. And when he wasn’t pacing, he often wore a blank look. He urinated on himself. He held his right hand in an odd, crooked position. He lost the ability to drink from cups or water bottles. He stopped using forks or spoons, and he ate almost nothing. Whenever Wendy set a bowl of rice on the table, he would stare at it, take a handful of grains, and watch as they fell through his fingers. 

The syndrome no one looked for 

About a quarter of children with autism have profound autism, like Lukas. These children have significant intellectual disabilities, with IQs about half that of their peers, and they require constant care. Lukas had suffered setbacks in the past, but neither parent could understand why he had regressed so severely, so suddenly. Was it because of his school closure, or something else? 

As a year of quarantine ticked by, Lukas’s condition grew dire. Seized by unprovoked rage, he would throw chairs across the living room and chase his older sister through their home, forcing her to barricade herself in a bedroom. Once, as Wendy drove, he grabbed her ponytail and tried to drag her into the backseat. What bothered Wendy most, though, was when Lukas stopped talking. She had always felt fortunate that, though Lukas couldn’t hold a conversation, at least he could speak — many profoundly autistic children cannot — and she feared she might never hear his voice again. 

One night in September of 2021, Wendy, desperate for answers, searched the internet for anything she could find about autistic teenagers who paced. Lukas’s neurologist had attributed his behavior to autism, nothing more. But, in Wendy’s view, his symptoms were all too dramatic, all too confounding, for that explanation. As she read, she happened upon another possibility. “Have you considered autism-related Catatonia?” she wrote to the neurologist the next morning. “The description of this sounds like Lukas.” 

Catatonia, a neuropsychiatric syndrome, was first described in 1874 by the German psychiatrist Karl Kahlbaum. Then, as now, catatonia’s defining characteristic was stupor. When catatonic, people often become immobile and lose the ability to speak, as if they’re in a living slumber. The lights are on but nobody’s home, as one doctor put it to me. Other patients, like Lukas, move excessively but nonetheless regress. In any case, doctors have no clear idea what causes catatonia, only that it’s triggered by myriad factors: stroke, infections, poisoning, neurodevelopmental disorders, even fear. 

The syndrome is rare, affecting fewer than 30 people per 100,000.  But in recent years, doctors, who have historically understudied catatonia, have recognized its high occurrence among people with autism. Studies estimate that the prevalence ranges from 12 to 17 percent among all autistic individuals, while the rate is thought to run closer to 35 percent among autistic children. But even that figure could be low, since clinicians can easily mistake catatonia for sleepiness or irritability in young patients. 

“Catatonia is being recognized as one of the most important problems in psychiatry and within our general hospitals across the country,” said Brian Barnett, a psychiatrist at the Cleveland Clinic. That’s because if catatonia goes untreated, it can lead to blood clots, malnutrition, pneumonia, and self-harm. The mortality rate can reach as high as 50 percent in undiagnosed cases, largely because patients stop eating. 

For Wendy, reading about catatonia was revelatory — she finally had an explanation for  Lukas’s baffling behavior, and maybe now his doctors could help to reverse it.

Lukas’s neurologist wrote him a prescription for Ativan, a benzodiazepine that’s commonly used to treat catatonia. Within three days, Lukas began to speak again, but his aggression didn’t abate, and he still couldn’t use the bathroom, buckle his seatbelt, or take off his clothes without help. 

A stigmatized therapy, and a child in crisis

On February 18, 2022, Lukas’s aggression crescendoed. First, he lashed out at Wendy as she tried to give him medication, ripping her shirt. Then he targeted Rod as he opened mail in the kitchen. The couple attempted to coax Lukas into his bedroom, the one place he could settle himself. When he failed to calm down there, they contacted his psychiatrist, who advised them to call 911. 

Once on the scene, first responders restrained Lukas, put him on a stretcher, and transported him to the children’s hospital of Vanderbilt University Medical Center. 

Lukas had poor experiences at Vanderbilt in the past, and Wendy was reluctant to try it again. This time, to her relief, she and Rod met psychiatrist Joshua R. Smith. When Smith was young, one of his sisters died due to complications from a chromosomal abnormality, and her death put him on a track toward medicine. He had a deep interest in catatonia, an uncommon specialty, and, though early in his career, he had seen situations similar to Lukas’s, where a medical system had blamed a patient’s regression on autism. “But that’s not right,” Smith said. 

Catatonia and profound autism have overlapping signs, like mutism and staring, but people with autism seldom regress from their baseline, or normal, condition after they turn two or three years old — that is, they don’t rapidly lose skills they’d mastered, whereas with catatonia they do, and fast. “Everything comes crashing down,” Smith explained. 

At Vanderbilt, Smith adjusted Lukas’s medications, and, after four grueling days in the hospital, he calmed down enough to return home. Before the family left, Smith told Wendy and Rod that he was starting a clinic, one of the first of its kind, at Vanderbilt to study catatonia. He invited them to participate. 

Wendy agreed, and began bringing Lukas for appointments. But over the next few months, his aggression didn’t wane, despite his adjusted medications. Next, Smith recommended that Lukas try electroconvulsive therapy, or ECT, the other primary therapy for catatonia.

During the procedure, a doctor places electrodes on the patient’s head, then a device sends small electrical pulses into the brain, effectively resetting it with a brief seizure. ECT was highly stigmatized in the mid-century, following a series of abuses, but the medical community has now widely accepted ECT — when administered appropriately — as an effective therapy for catatonia, along with major depression, schizophrenia, and bipolar disorder.

Still, Wendy had doubts. Did she really want us to do this to her child? Even some doctors who support ECT find it unsavory to strap down and shock patients. But for many families, the hope of recovery outweighs their misgivings. Amy Lutz, a historian of medicine at the University of Pennsylvania, estimates that her autistic son has received ECT more than 600 times over the past 15 years. “His entire quality of life hinges on the stability that ECT brings him,” she said. “There’s no doubt in my mind that without it he would be on a very restrictive, locked ward,” rather than living at home.

Wendy, hoping for a similar outcome for her son, agreed to move ahead. She drove Lukas to Vanderbilt once a week, but his aggression didn’t subside after his first treatment, or his second, or his third. ECT had to work, Wendy told herself, because Lukas had no other options. 

The first sign of improvement came after nearly 50 treatments when Lukas stopped repeating a nonsensical phrase he’d been saying for months. Then he began to eat again: mashed potatoes, mac and cheese, nutrient shakes. Soon, his aggression eased. “It wasn’t a magic wand,” Wendy said of ECT. Still, his improvements were significant, lifesaving even. 

What science can reverse — and what it can’t

From 2021 to 2024, Smith and some of his colleagues treated 44 other autistic patients with catatonia. Some had likely had chronic catatonia for years, and their symptoms had crystallized owing to a lack of effective treatment. A few were in critical condition from having eaten so little. 

Past studies on catatonia had largely been anecdotal in nature. Smith’s team, in contrast, carefully tracked patients over three years, producing quantitative data on the efficacy of treatments, in what proved to be one of the largest clinical studies of catatonia to date. Smith first treated members of the group with various drugs. Then, if medication alone proved ineffective, he turned to ECT. Sixteen patients, including Lukas, received the treatment. 

In a paper published earlier this year, Smith showed that a combination of medication and ECT measurably improved the conditions of all 45 patients, a significant finding in support of ECT’s efficacy in treating the most severe, medication-resistant cases of catatonia.

“Overall ECT has been above and beyond anything we could have possibly imagined,” said Jackie Kancir, the executive director of the National Council for Severe Autism. Kancir’s 21-year-old daughter, Jadyne, has profound autism and catatonia. She began ECT at Smith’s clinic in 2023, and because of treatment, Kancir said, “Her language is better, her balance is better, her fine motor skills are better.” 

Unfortunately, Jadyne was an outlier: only 10 percent of Smith’s research group — five individuals — returned to baseline, entirely escaping catatonia’s clutches. For the other patients, including Lukas, their quality of life, though improved, remained worse than it was before catatonia set in. “Catatonia is almost like a traumatic brain injury in a way,” Smith explained. “There are long-lasting effects we don’t understand.”  

The lifeline that budget cuts could snap

Wendy and Rod Stotsenburg, though grateful for Lukas’s improvements, still grapple with the fact that, now 19, he may never function as well as he once did. For Wendy, his ordeal has underscored how poorly the public health-care system is set up to aid children and adults alike who have profound autism or catatonia. Tennessee, like many conservative states, provides minimal support for disabled residents, making federal benefits essential for families. Lukas receives about $660 a month from Social Security to help cover his care. He gets health insurance through Medicaid, which provides coverage for 72 million disabled or poor Americans. 

“These kids will need lifelong care,” Wendy said. “I’m going to die; my husband is going to die. Where is my son going to go?” 

The GOP-controlled Congress has compounded such concerns. In May, House Republicans passed their version of a spending bill that aims to slash more than $500 billion in funding to Medicaid over the next eight years in order to pay for President Trump’s tax cuts, which stand to disproportionately benefit wealthy households. The Senate is now scrambling to pass its own version before the upcoming July 4th holiday. The proposed Medicaid cuts in its bill would leave an estimated 11.8 million people uninsured, as well as add nearly $4 trillion to the national debt over a decade. 

“The threats to Medicaid have put the profound-autism community into a complete panic,” said Lutz, the historian of medicine. 

Parents fear that the budget cuts, if enacted, would reduce their child’s access not only to specialized clinics like Smith’s but even to basic medical care. Kancir, who lives in Paris, Tennessee, worries that if states, which administer Medicaid for the federal government, receive reduced federal funding, they might look for savings by limiting care for high-need populations. And if that were to happen, “I don’t know what more we could lose,” she said. “The state of Tennessee can’t” — or won’t — “provide anything for us.”

Kancir was approved under Medicaid to receive in-home care for her daughter, but, because Tennessee invests relatively little in public health, she is one of more than a thousand people in the state waiting for such services, according to the latest data. Kancir and her daughter would move to another state with better public care options, but she said Smith’s clinic keeps them in Tennessee. 

Federal cuts to scientific research stand to be no less consequential. President Trump’s budget proposal calls on Congress to slash $18 billion in funding — a 40% reduction — next year to the National Institutes of Health (NIH), jeopardizing grants that support research at universities and medical centers across the country. Already this month, Vanderbilt announced that it planned to terminate up to 650 staff members as part of a $300-million budget reduction — a direct consequence of federal grant cuts, both expected and already in effect. Smith, like many Vanderbilt researchers, is still trying to determine the full effect of the cuts on his clinic and department. They could be perilous. 

NIH grants have historically been a major source of funding for autism science, and experts have warned that federal funding cuts could result in a lost generation of researchers. Catatonia researchers, for their part, have never received significant federal funding — one reason the syndrome is understudied — and that will surely not change in the near future, despite recent breakthroughs at Smith’s Vanderbilt clinic and elsewhere.

Many parents of profoundly autistic children have taken offense at the fact that, at the same time the Trump administration aims to curtail research funding, it wants “to spend money on stuff we already know about,” Lutz said — like investigating the (nonexistent) link between autism and childhood vaccines, a conspiracy theory pushed by Robert J. Kennedy, Jr., who, as the Secretary of Health and Human Services, now oversees the NIH. 

Wendy has tried to distract herself from the strong possibility that Congressional Republicans will gut Medicaid and research funding. She and Rod seldom leave the home with Lukas other than for school or doctor visits, but one beautiful day this spring, they decided to take him out for ice cream. Lukas was restrained in a medical stroller. As soon as they ordered, Lukas, in a sudden, rare outburst, lunged at Wendy, swinging his arms and trying to grab her shirt collar. Wendy and Rod gathered their things and raced Lukas back to their SUV, then continued home. But at least at their house, Lukas is happy now. He doesn’t pace anymore, and he can sit calmly and watch videos on an iPad or a phone, and he’ll respond to questions about what he wants to eat or drink. Until research unravels more mysteries around catatonia, and until therapy for it advances further, that has to count as progress for now.