Christine LyBurtus was aching and fearful of what might happen when her 13-year-old son returned home.
Noah had been sent to Children’s Hospital of Orange County for a psychiatric hold lasting up to 72 hours after he punched at walls, flipped over a table, ripped out a chunk of his mother’s hair and tried to break a car window.
“There’s nothing else to call it except a psychotic episode,” LyBurtus said.
The clock was ticking on that August day in 2022. The single mother wanted help to prevent such an episode from happening again, maybe with a different medication. Hospital staff were waiting for a psychiatric bed, possibly at another hospital with a dedicated unit for patients with autism or other developmental disabilities.
But as the hours ran out on the hold, it became clear that wasn’t happening. LyBurtus brought Noah home to their Fullerton apartment.
“When he came back home, it kind of broke my heart,” said his sister, Karissa, who is two years older. “He looked like, ‘What the heck did you guys put me into?’”
The next night, Noah was back in the ER after smashing a television and attacking his mother. This time, he was transferred to a different hospital for three weeks, prescribed medications for psychosis, and then sent to a residential facility in Garden Grove.
LyBurtus said she was told it would be a stopgap measure — just for three weeks — until she could line up more help at home. But when she phoned to ask about visiting her son, LyBurtus said she was told she couldn’t see him for a month.
“He lives here now,” someone told her, she said, and the staff needed time to “break him in.”
LyBurtus felt like she was being pushed to give up her son, instead of getting the help her family needed. She insisted on bringing him home.
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Autism is a developmental condition that can shape how people think, communicate, move and process sensory information. When Noah was 3, a doctor noted he was a “very cute little boy” who played alone, rocked back and forth, and sometimes bit himself. Noah’s eye contact was “fleeting.” He could speak about 20 words, but often cried or pulled his mother’s hand to communicate.
The physician summed up his behavior as “characteristic of a DSM-IV diagnosis of autistic disorder.”
When he was in elementary school, LyBurtus stopped working full time outside the home and enrolled in a state program that paid her as his caregiver. She relies on Medi-Cal for his medical care, and much of his schooling has been in Orange County-run programs for children with moderate to severe disabilities.
Noah does not speak but sometimes uses pictures, an app on a tablet, or some sign language to communicate. When a reporter visited their home last year, Noah bobbed his head and shoulders as he listened to music on his iPad. He flapped his hands as LyBurtus made him a peanut-butter-and-banana smoothie, and then dutifully followed her instructions to chuck the peel and put the almond milk away. It was a good day, LyBurtus said with relief.
But on other days, LyBurtus said her son could be rigid; his demands, unpredictable. “Some days he’s fixated on having three pairs of pants on … Some days he wants to take seven showers. The next day, I can’t get him to take showers.”
When frustrated, Noah might erupt, banging his head against walls and trying to jump out the windows of their apartment. He had kicked and bitten his mother when she tried to redirect him. In the worst instances, LyBurtus had resorted to hiding in the bathroom — her “safe room” — and urged Karissa to lock herself in the bedroom.
As Noah grew taller and stronger, LyBurtus stripped bare the walls of her apartment to try to make it safe, installed shatterproof windows and removed a knob from a closet door to prevent Noah from using it as a foothold to scale over the top of the closet door. She made sure to flag her address for the Fullerton Police Department so it knew her son was developmentally disabled.
“I’m just so grateful that my son never got shot,” LyBurtus said.
Each of the 911 calls was the start of a Sisyphean routine. Noah “has been challenging to place in [a] mental health facility due to behavioral care needs with severe autism,” a doctor wrote when he was back at Children’s Hospital of Orange County yet again.
As the family tried to get through each crisis, LyBurtus was also facing a common struggle among parents of California children with disabilities: not getting the help they were supposed to receive from the state.
LyBurtus was getting assistance through a local regional center, one of the nonprofit agencies contracted by the California Department of Developmental Services. She said she’d been authorized to receive 40 hours weekly of respite care — meant to relieve families of children with disabilities for short periods — but was sometimes receiving only 12 to 16 hours.
She was also supposed to have two workers at a time, LyBurtus said, but caregivers were so scarce that she was scheduling one at a time in order to cover as many hours as she could.
In the meantime, Noah wasn’t sleeping and she was going through so much laundry detergent and quarters that her grocery budget was drained. At one point, she wanted to go to a food bank, but there would be no one to watch him.
“I could not be anymore tired and frustrated!!!!” she wrote to her regional center coordinator. “Is the only way Noah is going to get help [is] if I abandoned him and surrender him to the State!?!?”
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Across the country, surging numbers of young people have landed in emergency rooms in the throes of a mental health crisis amid a shortage of needed care. Children in need of psychiatric care are routinely held in emergency departments for hours or even days. Even amid COVID, as people tried to avoid emergency rooms, mental health-related visits continued to rise among teens in 2021 and 2022.
Among those hit hardest by the crisis are autistic youth, who turn up in emergency rooms at higher rates than other kids — and are much more likely to do so for psychiatric issues. Many have overlapping conditions such as anxiety, and researchers have also found they face a higher risk of abuse and trauma.
“We’re a misunderstood, marginalized population of people” at higher risk of suicide, Lisa Morgan, founder of the Autism and Suicide Prevention Workgroup, said at a national meeting.
Yet the available assistance is “not designed for us.”
According to the National Autism Indicators Report, more than half of parents of autistic youth who were surveyed had trouble getting the mental health services their autistic kids needed, with 22% saying it was “very difficult” or “impossible.” A report commissioned by L.A. County found autistic youth were especially likely to languish in ERs amid few options for ongoing psychiatric treatment.
In decades past, many psychiatrists were unwilling to diagnose mental health disorders in autistic people, believing “it was either part of the autism or for other reasons it was undiagnosable,” said Jessica Rast, an assistant research professor affiliated with the A.J. Drexel Autism Institute. Much more is now known about both autism and mental health treatment, but experts say the two fields aren’t consistently linked in practice.
Mental health providers may focus on an autism diagnosis for a prospective patient and say, “‘Well, that’s not in our wheelhouse. We’re treating things like depression or anxiety,’” said Brenna Maddox, assistant professor of psychiatry at the University of North Carolina School of Medicine.
Yet patients or their families “weren’t asking for autism treatment. They were asking for depression or anxiety or other mental health treatment,” Maddox said.
In the meantime, the system that serves children with developmental disabilities has faltered.
“Never have I seen that we can’t staff the needed things on so many cases,” Larry Landauer, executive director of the Regional Center of Orange County, said last year. Statewide, “there’s thousands and thousands of cases that are struggling.”
“If I’m a respite worker and I get called on to provide help to families … who am I going to select?” Landauer asked. “The [person] that watches TV and plays on his iPad and I just sit and monitor him? Or do I take someone that is significantly behaviorally challenged — that pulls my hair, that scares me all the time, that tries to run out the door? … Those are the ones getting left out.”
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The fall and winter of 2022 were so trying that LyBurtus eventually took matters into her own hands. Noah bit his mother and smashed a bathroom window and tried to climb out before the Fullerton Fire Department arrived. Weeks later, LyBurtus had to dial 911 again after he bit his sister’s finger badly enough to draw blood.
He ended up in a hold at Children’s Hospital of Orange County, which searched for another facility that might help him, but “all placement options declined patient placement,” according to his medical records.
Noah was again sent home with his mother, but the next day, he was back at Children’s Hospital of Orange County after slamming his head against a tile floor.
LyBurtus, frantic and bruised, made call after call and finally used her credit card to pay for an ambulance to take him to UCLA Resnick Neuropsychiatric Hospital, where he was admitted.
Week by week, psychiatrists there said Noah seemed to be making some strides as they adjusted his alphabet soup of medications. But hospital staff struggled to understand what would set him off.
Once, while playing cards, Noah suddenly started knocking the cards off the table and struck another patient in the face. Another day, he appeared suddenly to be frightened after using the bathroom, and then charged at a computer plugged in nearby.
But there were also days when he danced to a Michael Jackson song, or played Giant Jenga outside on the deck. One day, a doctor wrote, “He made eye contact for a few seconds. I waved to him, and he looked at his hand, as though he was wondering what to do with it in return.”
LyBurtus was straining to find more help at home so UCLA held off on discharging him, but at the end of January 2023 Noah was sent home. With no changes in medication planned, “and the strong possibility that Noah grew tired of the inpatient setting, the ward no longer was deemed therapeutic or necessary,” a doctor wrote.
Less than a month later, he was back in the emergency room at Children’s Hospital of Orange County after biting and attacking his mother.
A psychiatrist at the pediatric hospital wrote that because he had limited ability to communicate, another round of psychiatric hospitalization would do little unless it was specialized for “individuals with neurodevelopmental needs.” When the 72-hour hold at children’s hospital ran out, LyBurtus asked for an ambulance to take Noah home, fearful of driving him herself.
In May, the month Noah turned 14, LyBurtus heard the regional center had found a place for Noah: a four-bed facility in Rio Linda, a tiny town near Sacramento that she’d never heard of. He could live there for more than a year, she was told, and then hopefully return home with the right support.
But LyBurtus fretted about what she would do if something happened to him so far away. She felt, she said, like she had failed her child. Months passed as they waited for a spot there; LyBurtus said she was told they were trying to hire the needed staff.
“I don’t want him to go,” she said, “but I don’t want to continue going on the way that we’re going on.”
Then in August, LyBurtus was told the regional center had found a spot at a facility much closer to home: the state-run South STAR facility in Costa Mesa, about 20 miles from their apartment. Noah would occupy one of only 15 STAR beds across the state for developmentally disabled adolescents in “acute crisis.”
On a bright September morning, LyBurtus pulled up at an unassuming gray house with a “Home Sweet Home” sign by the door. The three teens living there were gone for the morning while an administrator and South STAR program director Kim Hamilton-Royse showed LyBurtus around the house.
Minutes into the tour, LyBurtus found herself crying. Hamilton-Royse stopped her explanation of the daily schedule. “I know this is super hard for you,” she said gently.
But LyBurtus brightened at the sight of the sensory room outfitted with crash pads and a mesmerizing, colorful cylinder of bubbling water. Hamilton-Royse pointed out a vibrating chair and added that they had a projector that would fill the room with illuminated stars.
LyBurtus took photos on her smartphone to show Noah. “You’re not going to be able to get him out of here,” she said.
As they rounded the rest of the house — bedrooms with dressers secured to the wall, a living room with paintings of sailboats, a fish tank — Hamilton-Royse asked if LyBurtus felt any better.
“I do,” she said. “I just hope that he can behave.”
Hamilton-Royse reassured her that South STAR had never kicked anyone out. “And we’ve had some really challenging folks,” she said.
“I promise you we’ll take very good care of him.”
As she returned to her car, LyBurtus took a deep breath. “It’s hard not to feel like I’m betraying him,” she said, her voice shaking. “But I can’t keep living like this, you know?”
Three days later, Noah went back to the Children’s Hospital of Orange County on another psychiatric hold. He came home, then was back in the emergency department a week and a half later.
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The October night before Noah left home, LyBurtus had brought home sushi for him, one of his favorite foods. He fell asleep around 6:30 p.m, and woke up again at 1 a.m. LyBurtus gave him his medication and as he drifted back to sleep, his mother held him, enjoying the peace.
When he woke up in the morning, she could tell he knew something was up. His clothes had been packed. She’d already shown him photos of the Costa Mesa home and told him, “This is where you’re going. I’m still your mom. I’m still going to go and see you.”
When the black SUV arrived, LyBurtus offered Oreos to coax him into the unfamiliar car. She followed the SUV in her car, staying far enough behind to avoid having Noah see her when he arrived. LyBurtus had been told it would ease the transition.
Back at home, she sank into the bathtub, utterly spent. “I’m going to have to just go with trusting this process as much as I can,” she said, “because I don’t have another choice right now.”
The next day, she met with the South STAR staff to tell them more about Noah. What he likes to eat. What triggers him. His favorite things to do. The Costa Mesa home called whenever staff had physically restrained Noah, but when a weekend passed without a call, she felt some relief.
Lyburtus smiled at the photos and videos sent home: putting together an elaborate stacking toy, washing dishes. It felt like things were going well, LyBurtus said. The staff had scaled back the amount of psychiatric medication he was taking.
But more than a month later, when she first went to visit Noah, he excitedly took her to the front door, as if to say, “Let’s go,” she recalled. She gently told him she was just visiting.
He led her to the side door instead. She steered him away again. They stepped into the courtyard, and Noah immediately went to the gate to exit.
LyBurtus fell into a funk. As she worried about Noah, she was also figuring out how to make ends meet. With Noah in the Costa Mesa home, Lyburtus was no longer being paid more than $4,000 a month as his caregiver, her sole source of income for years. She tried a number of jobs but ultimately found the work that suited her: caregiving for an elderly woman and children with disabilities.
Her second and third visits with Noah were easier. She snapped photos — Mother and son nestled together on the couch. Noah touching her forehead.
The STAR program runs up to 13 months. As time passed, the regional center had started talking to her about where Noah would go next. LyBurtus was startled.
Wasn’t the plan for him to come home, she asked?
That was still on the table, LyBurtus said she was told. But if he wasn’t ready, they didn’t want to wait until the last minute to find somewhere else for Noah, who turned 15 in May.
LyBurtus wanted to block out the idea of him going to another facility.
“I never want to live the way we were living again,” she said.
“But is that worse than him being hours away? I don’t know.”
