Science
The new COVID vaccine is here. Why these are the best times to get immunized
![The new COVID vaccine is here. Why these are the best times to get immunized The new COVID vaccine is here. Why these are the best times to get immunized](https://ca-times.brightspotcdn.com/dims4/default/1159eed/2147483647/strip/true/crop/7369x3869+0+623/resize/1200x630!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F84%2Fa0%2F4bce7b184d2484138d90bf641cb6%2F1473216-me-0828-covid-vaccines-cmh-08.jpg)
With the new COVID-19 vaccinations for the 2024–25 season arriving in California and across the nation, an important question arises: When is the best time to get the shot?
The U.S. Centers for Disease Control and Prevention says September and October are generally the best times for most people to get the COVID immunization.
But which month is better for your particular situation? Should you rush to get the shot now, considering the high levels of COVID circulating in California? Or should you wait till closer to Halloween in hopes that doing so will extend more robust protection against infection through Christmas and into the New Year?
And what about people who got infected recently or got the old immunization formula a couple of months ago?
Providers in California began administering COVID-19 immunizations using the latest formulation this week. Appointments are available at CVS, Walgreens, Rite Aid, Ralphs, Vons, Albertsons, Pavilions and Safeway stores. Kaiser Permanente expects to begin making vaccines available by mid-September and possibly earlier in some locations. Sutter Health is also aiming for a mid-September rollout.
The CDC recommends that everyone 6 months old and older get the updated COVID-19 vaccination, which was authorized for distribution by the U.S. Food and Drug Administration last week.
Here are some factors to consider:
The case for October
The head of the CDC suggested that the most important decision is not when to get the vaccination, but just getting it.
“The important part is getting it done,” CDC Director Mandy Cohen said at a briefing. “If September, from a calendar perspective, works better for folks, great. October gets you closer to the winter season. But the important part is getting it done.”
Dr. Peter Chin-Hong, a UC San Francisco infectious disease expert, makes the case for an October dose.
Getting the COVID-19 vaccine now or in October will offer good protection against severe disease for at least a year, he said. But the best protection against infection is roughly six to eight weeks after getting vaccinated — although that window can be wider if the vaccine is a close match to circulating subvariants, Chin-Hong said.
“To me, the sweet spot is always October,” he said, as it’s closer to the peak of the late fall and winter respiratory virus season, as well as major holidays like Thanksgiving, Christmas and New Year’s. Based on wastewater data during the last two winters, COVID peaked in California and nationally either the last week of December or the first week of January.
The case for September
But Dr. Elizabeth Hudson, regional chief of infectious diseases for Kaiser Permanente Southern California, suggested that people get the vaccine as soon as they can.
“The way that COVID is looking now — with just the sheer volume of cases — this is not a year that you want to wait,” Hudson said. “As soon as you are able to get the vaccine, you should get it.”
COVID-19 continues to circulate at a very high level nationally and in California. Depending on the region, health officials are “potentially seeing some indication of a plateauing of the summer increase in COVID-19,” said Dr. Demetre Daskalakis, who heads the CDC’s National Center for Immunization and Respiratory Diseases. Still, “we’re not out of the woods yet,” he added. Trends won’t be clear until there are a few weeks of sustained declines, and that hasn’t happened yet.
Not only is the hyperinfectious KP.3.1.1 subvariant gaining dominance nationwide, doctors also are closely watching a new upstart subvariant, XEC, that has been getting attention in Europe.
Dr. Peter Marks, the FDA’s vaccine chief, said in an Aug. 23 briefing that he has scheduled his vaccine appointment.
“Getting vaccinated now probably gives you the maximum amount of protection that you can get against what’s currently circulating, and that will last for several months, at least,” he said.
What about seniors and immunocompromised people?
Chin-Hong said there are certain people he would urge to get the COVID-19 vaccination as soon as possible. That includes those who are older or immunocompromised and haven’t been vaccinated in more than a year. Those groups are at highest risk for being hospitalized with COVID, Chin-Hong said.
“I would love them to get protected,” he said.
Dr. Eric Topol, director of the Scripps Research Translational Institute in San Diego, offered some questions people should ask themselves to determine whether they should get vaccinated now versus in October.
“How long has it been since you had a booster? If it’s been more than six months, you know your immunity has waned,” Topol said. “How is your risk? Are you older — greater than 65? Are you immunocompromised? Are you somebody with a lot of comorbidities? You might want to just go now [if so], because you’re vulnerable.”
“For people at risk, I don’t think it’s a good idea to delay,” Topol said.
Another question: Are you getting vaccinated to reduce your chance of long COVID? “Because the studies in totality suggest up to a 50% reduction of long COVID” following vaccination, he said. “In fact, that’s people in their 30s and 40s that are at the highest risk for long COVID after a mild infection, and a lot of people tend to forget that issue.”
Another consideration is whether you are about to go on a trip or planning an unmissable event or experience.
“Right now, if they want to prevent infection, it’s a good time to get something because it’s so closely matched to what’s going around,” Chin-Hong said of the new vaccine.
But if you’re doing lower-risk activities and would rather save your time of enhanced protection against infection for the fall and winter holidays, some doctors say it’s reasonable to wait until October to get vaccinated
Already, it appears that XEC, the new subvariant detected in Europe, may be a contender for a late autumn and winter COVID wave, Topol said.
“Waiting a couple extra months so you’re closer to whatever the next wave/wavelet is like, that’s a reasonable plan,” Topol said. But protecting against infection is less important than protecting against severe illness, which the vaccine is very good at doing.
Topol said he’s getting his COVID-19 vaccination Friday, in part because he’s going on a cross-country trip and he’ll be indoors with crowds and unable to avoid exposure to the virus, he said.
Masking remains important to avoid infection, but there are some situations where people may not be able to wear a mask all the time.
Overall, though, there isn’t any one simple answer as to whether September or October is better for timing your COVID vaccination. “It’s really up to the person,” Topol said.
What about people who had COVID-19 recently?
After infection, people may consider waiting three months to get the latest COVID vaccination, according to the CDC. In terms of when to start counting the three-month period, Hudson said a good rule of thumb would be from when your symptoms began or, if asymptomatic, when you were diagnosed.
Part of that reason, the CDC says, is that “the risk of getting COVID-19 is less likely in the weeks to months following a SARS-CoV-2 infection,” using the formal name of the virus that causes COVID.
Besides potentially being able to benefit from some natural immunity, “there are also some studies that show that waiting for a few months after you’ve had COVID to get your COVID vaccine may increase your overall level of protection,” Hudson said.
But this advice applies only to people who are at lower risk for COVID and its complications, Hudson added.
For those at higher risk — such as seniors 65 and older and those who are immunocompromised — or anyone in frequent contact with people at higher risk, “they should get their vaccine as soon as they’re feeling better,” she said.
What about people who got the old vaccine this summer?
A number of people who weren’t up to date on their vaccinations may have gotten the old vaccine formula — originally released in September 2023 — over the summer. Those people should wait two months before getting the newer shot, Hudson said.
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Science
Opinion: How bringing back the woolly mammoth could save species that still walk the Earth
As more species are pushed to the brink of extinction, conservationists are responding to our biodiversity crisis in new and sometimes controversial ways. One such novel approach could be described as the mammoth in the room: “de-extinction” technology that has the potential to protect and restore species on the brink of extinction and, more provocatively, those that disappeared from the planet long ago.
We can avoid such innovation and the controversy that comes with it. But the reality is that many milestone moments in conservation have been contentious.
Take the California condor, whose population was down to 22 known individuals in 1982. At the time, taking all the animals out of the wild for a captive breeding program sparked outrage among conservation professionals and in local communities. Today, however, thanks to those efforts and subsequent reintroductions of the birds into the wild, their population exceeds 500. Now captive breeding programs are regularly used to maintain and restore a variety of threatened species.
Or consider conservationists’ difficult decision in 1995 to relocate eight female mountain lions from Texas to infuse new genes into the population of Florida panthers, a subspecies of the puma. Only about 30 Florida panthers were left at the time, and inbreeding had rendered them susceptible to disease and other health problems. Although this genetic rescue effort was highly controversial at the time, it was also very successful, decreasing the effects of inbreeding and allowing the population to steadily grow. Today about 200 adult panthers live in southwest Florida, and the intervention is regarded as a model.
The use of assisted reproductive technology such as artificial insemination and in vitro fertilization to bolster dwindling species has been a more recent subject of debate within the conservation community. But since these tools were introduced, they have become standard among zoos’ “insurance” populations of threatened species and in captive breeding programs aimed at reintroducing species into the wild.
Our organizations, the biotechnology company Colossal Biosciences and the conservation group Re:wild, recently announced a partnership to use de-extinction technology to protect and restore species on the brink of extinction. It is a powerful collaboration between an organization with extensive experience in wildlife and ecosystem conservation and a company that is using gene editing and genetic engineering technology to make extinction a thing of the past.
Both Re:wild and Colossal want to save species that are going extinct now. But at the heart of Colossal’s mission is a belief that the science to restore and recover species on the brink can be accelerated by moonshot projects such as reviving the mammoth or the dodo. This focus on de-extinction, or bringing back extinct species, is understandably a subject of vigorous debate.
So it’s no wonder that our partnership caught some in the conservation community by surprise. Even internally, it took lots of thoughtful and nuanced discussion — involving often passionate and sometimes seemingly insurmountable differences — to align around shared goals.
In the end, even though Re:wild has reservations about whether the woolly mammoth and other extinct species should be returned to Earth, the organization will advise on the feasibility of such reintroductions because of the projects’ potential to generate technology that could save hundreds of critically endangered species. We will work together to study the advantages, disadvantages and feasibility of each reintroduction, working with local interests and a cross-section of the conservation community. With the world’s sixth great extinction event upon us, we need every available tool to prevent extinctions and accelerate species restoration.
The conservation community has recovered species from the brink of extinction — some of which were down to a few individuals — but every one of those recoveries has been hard-fought. We will be able to restore critically endangered species much more quickly by combining Colossal’s technology with proven approaches such as conservation breeding programs, translocations of endangered species populations, assisted reproductive technology, biobanking of threatened species’ tissues and cells, and genetic rescue.
We are already seeing the benefits of Colossal’s technology for threatened species. The tools and techniques developed for every effort to bring a species back from extinction will also benefit closely related species that still live.
The woolly mammoth project, for instance, has sequenced the genomes of both the Asian elephant and the African elephant; has developed induced pluripotent stem cells with the ability to differentiate into other types of elephant cells; and is accelerating a cure for the deadly elephant herpes virus. Many extant marsupials will likewise benefit from the technology Colossal is developing to bring back the thylacine, an extinct carnivorous marsupial also known as the Tasmanian tiger or Tasmanian wolf. That includes the development of artificial pouches and synthetic milk, which will enable expanded conservation breeding programs and reintroduction efforts.
We’re also using or planning to use this technology to protect and restore northern white rhinos, Sumatran rhinos, pink pigeons, Tasmanian devils, northern quolls (a small carnivorous marsupial) and many other species.
Not everyone agrees that a headline-grabbing de-extinction of the woolly mammoth would be beneficial to our planet. But it’s hard to dismiss the project’s capacity to create tools and technologies that can prevent countless species from going extinct in the first place.
Our partnership is also allowing us to tap into new sources of conservation funding that would not be available without the interest that de-extinction generates. Even though it will always be cheaper and easier to save a species from extinction than to bring it back, we still need more resources to combat the biodiversity crisis.
Conservation is not easy, and the extinction crisis has no single solution. With an estimated 12% of bird species, 26% of mammals, 31% of sharks and rays, 36% of reef-building corals and 41% of amphibians at risk, we need to consider every tool we have to secure the future of our planet and all the life on it. We look forward to the day de-extinction technology is commonly used to restore endangered species and we’re considering the next conservation moonshot.
Matt James is Colossal’s chief animal officer. Barney Long is Re:wild’s senior director of conservation strategies.
Science
Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth
![Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth](https://ca-times.brightspotcdn.com/dims4/default/c574e68/2147483647/strip/true/crop/3840x2016+0+272/resize/1200x630!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F03%2F5f%2F9b5371ca44a698c75a8efc416908%2F1428876-me-noah-christine-lyburtus08-jlv.jpg)
In April, a group of Orange County parents flew to Sacramento to attend a conference hosted by Disability Voices United, an advocacy group for people with disabilities and their families.
They wanted to emphasize three issues to state officials at the event: the paucity of mental health care for children with developmental disabilities, the confusing mess of government systems meant to help them, and the gaps in availability of day-to-day caregiving.
Among them was Christine LyBurtus, a single mom living in Fullerton. Last fall, after repeated rounds of 911 calls and emergency hospitalizations, she had made the agonizing decision to move her son, Noah, who is autistic, into a state-operated facility for at least a year.
LyBurtus had struggled to find the support she needed to keep him at home. “Families are being forced to give up their children to group homes and treatment centers over 12 hours from their homes … or out of the state of California entirely,” she told the crowd at the conference.
Christine Lyburtus is embraced by Beth Martinko outside elevators in the Capitol Annex Swing Space building in Sacramento.
(Jose Luis Villegas / For The Times)
“I beg you to hear us,” she said to state officials before turning from the microphone.
Despite the growing diagnosis of autism, which has been estimated to affect more than 2 million children and teens across the country, experts and advocates have bemoaned glaring gaps in services to meet the mental health needs of autistic youth.
Some researchers have estimated that upward of 90% of autistic youth have overlapping conditions like anxiety, depression or ADHD. Many have suffered alarming levels of trauma.
Yet “there are very few specialized facilities in the country that meet the unique needs of individuals with autism and co-occurring mental health conditions,” especially in crisis situations, said Cynthia Martin, senior clinical psychologist at the Child Mind Institute, which is based in New York.
Between 2020 and 2021, the number of California children and teens served by the state developmental disability system who were deemed to have “complex needs” — a state term for those who needed a range of crisis services or landed in a locked psychiatric ward — rose from 536 to 677, according to a report released last year by the California Department of Developmental Services.
California has been working to build more facilities to house and support such youth, including STAR homes that provide “crisis stabilization” for roughly a year, like the one into which Noah moved. But the state has seen an uptick in the number of people in need of such programs, as well as more former residents boomeranging back for “further stabilization,” the state report said.
As of this summer, the STAR homes could accommodate only 15 teens across the state; the one that accepted Noah budgets for more than $1 million per resident annually.
There are other community facilities where developmentally disabled youth in crisis can be placed, but “there remains a critical need for a ‘can’t say no’ option for individuals whom private sector vendors cannot or will not serve,” the state report concluded.
Autistic people and their families have also lamented that they cannot find adequate help in their communities before they reach a crisis point. Researchers have found that mental health workers are often unprepared to work with people with intellectual or developmental disabilities or may chalk up symptoms to their disabilities, rather than overlapping needs.
![Christine LyBurtus looks at a drawing of her son, Noah](https://ca-times.brightspotcdn.com/dims4/default/4903c1b/2147483647/strip/true/crop/4188x3021+0+0/resize/1200x866!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F40%2F1c%2F03b7d00944628c69356eb7f746bd%2F1359789-la-me-autism-christine-lyburtus19-mam.jpg)
Christine LyBurtus looks at a drawing of her son, Noah, in their Fullerton home.
(Mel Melcon / Los Angeles Times)
“It’s pretty common for a mental health practitioner to turn away someone with a developmental disability or say, ‘I don’t serve that population,’” said Zoe Gross, director of advocacy for the Autistic Self Advocacy Network.
Alison D. Morantz, director of the Stanford Intellectual and Developmental Disabilities Law and Policy Project, called it a “scandal” that amid a scarcity of psychiatric beds for youth, “if a family member discloses that their child is on the autistic spectrum, they can say, ‘No thank you.’”
“It puts parents in impossible situations,” she said.
The biggest challenges for many families of autistic youth often surround aggression, which isn’t a core feature of autism, but the symptom of other issues that need to be uncovered, child and adolescent psychiatrist Dr. Matthew Siegel told a federal committee last year.
“You have to look underneath or in front of that … for what could be contributing or what is driving this aggression,” said Siegel, founder of the Autism and Developmental Disorders Inpatient Research Collaborative. He and other researchers have seen promising results from specialized units at hospitals, but few exist — “not even one per state.”
“Even specialized clinics that can work on these challenges are quite rare,” he said.
The Supreme Court has ruled that institutionalizing people with disabilities who could live in the community is discriminatory if a community placement “can be reasonably accommodated.” Federal investigations have, at times, faulted states for failing to provide needed services for people to stay in their homes or communities.
The law “requires that services are provided in the most integrated setting appropriate to the needs of a person with a disability,” according to the U.S. Department of Health and Human Services.
But the struggle to find needed services can end up pushing autistic people with mental health needs out of their communities. Bonnie Ivers, director of clinical services for the Regional Center of Orange County, said last year that “more and more families are having to review options that are outside of our county.”
Some Californians even go outside the state: As of June 2022, there were 49 youth with “complex needs” getting services outside of California, and an additional 33 “at risk of being referred to out-of-state resources,” according to the developmental services department.
In the following year, that number grew to 57 youth out of state — and an additional 64 who might be at risk of joining them. The numbers may actually be higher: The state agency says it learns about out-of-state placements only when families inform the regional centers that coordinate developmental disability services.
Nancy Bargmann, director of the California Department of Developmental Services, said their goal is to provide “a continuum of supports” so that families “don’t need to make that really hard decision of having their child not live at home.”
California has launched more than a dozen teams focused on crisis prevention, called START teams, which it says have helped keep people in their homes. Their services include connecting different systems that assist families, such as mental health providers and disability services.
But they do not yet exist everywhere in the state. California also has mobile “Crisis Assessment Stabilization Teams” — or CAST — that are meant for people who have exhausted other kinds of help or are at risk of having to move into more restrictive settings. There were three of them as of this spring, according to the developmental services department.
Judy Mark, president of the advocacy group Disability Voices United, argued it is counterproductive to try to stabilize a child away from his or her family. If at all possible, she said, California should be ensuring constant support in the home, which she argued would also be less costly than caring for a child in a STAR facility.
But disability services providers say that getting such caregivers has continued to be a challenge, with state rates for such workers outstripped by what they can earn elsewhere. Increases in those provider rates have been slowly phased in over time, with the next bump slated for January.
In many cases, “what you’d want to see is somebody, 24 hours a day, in the home helping the parent,” said Larry Landauer, executive director of the Regional Center of Orange County. But “that’s where we have been just drastically short on staffing.”
All the gaps in the system can come to a head when young people with developmental disabilities hit puberty, especially if they face “the inability to communicate in such a complex and confusing time,” said California Commission on Disability Access member Hector Ramírez, who is autistic and lives in the San Fernando Valley.
If autistic teens and their families cannot get the support they need, Ramírez said, it “has compounding consequences that result in people just getting worse — when they shouldn’t be getting worse.”
Science
'I don't want him to go': An autistic teen and his family face stark choices
!['I don't want him to go': An autistic teen and his family face stark choices 'I don't want him to go': An autistic teen and his family face stark choices](https://ca-times.brightspotcdn.com/dims4/default/3977abe/2147483647/strip/true/crop/5099x2677+0+378/resize/1200x630!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F71%2F99%2F70de3009400cbef38bc7f541c0a3%2F1359789-la-me-autism-christine-lyburtus1-mam.jpg)
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?’”
Christine LyBurtus makes a snack for Noah.
(Allen J. Schaben / Los Angeles Times)
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.
::
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.”
![Christine LyBurtus greets son Noah as he arrives home on a bus](https://ca-times.brightspotcdn.com/dims4/default/f95c568/2147483647/strip/true/crop/3600x2400+0+0/resize/2000x1333!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F11%2Fda%2F93ce430b4c1a8c00e415d6a4fc44%2F1265002-la-me-autism-christine-lyburtus-06-ajs.jpg)
Christine LyBurtus greets Noah as he arrives home from school.
(Allen J. Schaben / Los Angeles Times)
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.
![Noah leaps into the air while inside his home in Fullerton](https://ca-times.brightspotcdn.com/dims4/default/cc1df4a/2147483647/strip/true/crop/4687x3170+0+0/resize/2000x1353!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F02%2F84%2F0e14592c405ab11e6cf92ab63ffc%2F1359789-la-me-autism-christine-lyburtus10-mam.jpg)
Noah leaps into the air inside his Fullerton home. At left is Terrence Morris, one of Noah’s caregivers.
(Mel Melcon / Los Angeles Times)
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!?!?”
![Christine LyBurtus](https://ca-times.brightspotcdn.com/dims4/default/b638df7/2147483647/strip/true/crop/5952x4480+0+0/resize/2000x1505!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F66%2F07%2Fdd6e402c40debb87c4bb3f23d567%2F1265002-la-me-autism-christine-lyburtus-03-ajs.jpg)
Christine LyBurtus said she’s struggled to find the right care for Noah.
(Allen J. Schaben / Los Angeles Times)
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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.
![Karissa left, interacts with brother Noah on a couch](https://ca-times.brightspotcdn.com/dims4/default/50b9625/2147483647/strip/true/crop/3600x2710+0+0/resize/2000x1506!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2Fe6%2F93%2F15569bc34b12a576d6cd7708d0bd%2F1265002-la-me-autism-christine-lyburtus-11-ajs.jpg)
Karissa interacts with her brother, Noah, as he watches a video after school.
(Allen J. Schaben / Los Angeles Times)
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.”
::
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.
![Caregiver Terrence Morris, left, keeps a watchful eye on Noah](https://ca-times.brightspotcdn.com/dims4/default/6fae651/2147483647/strip/true/crop/6537x4480+0+0/resize/2000x1371!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2Fbe%2F20%2Faf74d7a248a4a3440caffde067d5%2F1359789-la-me-autism-christine-lyburtus18-mam.jpg)
Caregiver Terrence Morris, left, keeps a watchful eye on Noah.
(Mel Melcon / Los Angeles Times)
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.”
![Christine LyBurtus washes the face of son Noah](https://ca-times.brightspotcdn.com/dims4/default/46c29c8/2147483647/strip/true/crop/5472x3648+0+0/resize/2000x1333!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F34%2Fae%2F75644b0547f496748b1de43f4080%2F1359789-la-me-autism-christine-lyburtus9-mam.jpg)
Christine LyBurtus washes her son’s face. 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.
(Mel Melcon / Los Angeles Times)
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.
![Christine LyBurtus shows photographs to son Noah](https://ca-times.brightspotcdn.com/dims4/default/59daea0/2147483647/strip/true/crop/6450x4480+0+0/resize/2000x1389!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F8e%2F3f%2F6be1cbde44eea0376f6b8be75ca3%2F1359789-la-me-autism-christine-lyburtus16-mam.jpg)
Christine LyBurtus shows photographs to Noah.
(Mel Melcon / Los Angeles Times)
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.
![Christine LyBurtus reacts while boxing up items for son Noah](https://ca-times.brightspotcdn.com/dims4/default/502f247/2147483647/strip/true/crop/4432x3064+0+0/resize/2000x1383!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F4f%2Faa%2F7b71bd634cefb3ff9cdb9c75ce01%2F1359789-la-me-autism-christine-lyburtus3-mam.jpg)
Christine LyBurtus reacts while boxing up items for Noah’s move.
(Mel Melcon / Los Angeles Times)
“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?”
1
![Christine Lyburtus visiting a care facility](https://ca-times.brightspotcdn.com/dims4/default/42e54aa/2147483647/strip/true/crop/3600x2400+0+0/resize/1200x800!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F99%2Fdd%2Fc97bc023481daaa0f03a023810db%2F1351411-me-0922-autistic-residential-care-006-ik.jpg)
2
3
1. Christine Lyburtus tours a residential care facility in Costa Mesa, about 20 minutes from her home. (Irfan Khan / Los Angeles Times) 2. At the South STAR facility, LyBurtus was told, Noah would occupy one of only 15 STAR beds across the state for developmentally disabled adolescents in “acute crisis.” (Irfan Khan / Los Angeles Times) 3. “I just hope that he can behave,” LyBurtus said of son Noah. (Irfan Khan / Los Angeles Times)
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.
::
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.”
![Noah, 14, embraces his mother Christine LyBurtus](https://ca-times.brightspotcdn.com/dims4/default/0a172ee/2147483647/strip/true/crop/4795x3273+0+0/resize/2000x1365!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2Fd5%2Fb8%2F6e00124a4020a957ad62b663fcfa%2F1359789-la-me-autism-christine-lyburtus6-mam.jpg)
Noah embraces his mother shortly before he was picked up and driven to a residential care facility in Costa Mesa.
(Mel Melcon / Los Angeles Times)
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.
![Christine LyBurtus is comforted by Schahara Zad, left, and Terrence Morris, caregivers for her son Noah](https://ca-times.brightspotcdn.com/dims4/default/02281ce/2147483647/strip/true/crop/6720x4480+0+0/resize/2000x1333!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2F7c%2F07%2F4b40ebeb4734b8e16cd567080d76%2F1359789-la-me-autism-christine-lyburtus15-mam.jpg)
Christine LyBurtus is comforted by caregivers Schahara Zad, left, and Terrence Morris after Noah moved into his residential care facility.
(Mel Melcon / Los Angeles Times)
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?
![Christine Lyburtus, left, is briefed by Kim Hamilton-Royse while touring a residential care facility](https://ca-times.brightspotcdn.com/dims4/default/fb958b4/2147483647/strip/true/crop/3600x2400+0+0/resize/2000x1333!/quality/75/?url=https%3A%2F%2Fcalifornia-times-brightspot.s3.amazonaws.com%2Ffa%2F3a%2F099f79b541ef9cda6fc42e3beda1%2F1351411-me-0922-autistic-residential-care-016-ik.jpg)
Christine LyBurtus, left, is briefed by Kim Hamilton-Royse while touring a residential care facility for her son.
(Irfan Khan/Los Angeles Times)
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.”
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