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Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth

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Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth

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.

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(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.

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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.

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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

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.’”

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“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.

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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.”

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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.”

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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.”

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This Cell Feeds, Grows and Reproduces. And It’s Manmade.

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This Cell Feeds, Grows and Reproduces. And It’s Manmade.

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A SpudCell on a microscope slide

Scientists have long dreamed of discovering the alchemy by which chemicals can be turned into life. On Wednesday, a team at the University of Minnesota announced that it had taken a major step toward that vision.

Blending together dozens of ingredients, the researchers have synthesized simple cells that feed, grow, reproduce and compete with one another for food. If these cells are not yet fully alive, they have most of the hallmarks of life.

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“Life is not binary,” said Kate Adamala, a synthetic biologist who led the research. “That’s why I’m hesitant to call this ‘alive.’ There’s no clear line, as much as we would love it to be.”

Until now, scientists had never mastered the recipe for a cell that can perform so many functions, said John Glass, a synthetic biologist at the J. Craig Venter Institute in La Jolla, Calif., who was not involved in the study.

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“It is dazzling that she has put these things all together,” he said.

Drew Endy, a synthetic biologist at Stanford University, said, “It’s a cell that was built, not born. It’s constructed, but it does what cells do.”

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Dr. Adamala named her creation SpudCell, after its potato-like appearance. Rather than patent it, she and Dr. Endy are organizing a community of scientists to focus on making SpudCells more fully alive and adapting them to new kinds of experiments.

They and their colleagues have founded a nonprofit research organization that Dr. Endy estimates will spend hundreds of millions of dollars on the effort in the next decade. Hundreds of scientists are expected to join.

“We’re going to remember this moment,” said Roseanna Zia, a computational biologist at the University of Missouri who was not involved in the project.

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Dr. Adamala and her colleagues posted a 190-page account of their work online. The research is under review for publication in a scientific journal.

Scientists hope synthetic cells can tell them things about life that natural cells cannot, including such basic questions as how many genes are necessary for a minimal form of life.

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But synthetic cells also might someday be engineered to do things that natural cells can’t, like making new kinds of medicine or drawing large amounts of carbon dioxide from the atmosphere. In theory, engineered SpudCells might produce a vast range of proteins that natural cells cannot be coaxed to make, or even toxic chemicals like rocket fuel.

Now, “we can think about doing chemistry that we’re barely getting our heads around,” Dr. Glass said.

The trouble with life as we know it: mysterious, messy complexity. Our own DNA contains tens of thousands of genes, as well as millions of molecular switches turning those genes on and off. Scientists barely have a clue as to what many of those pieces of DNA are doing. Often a gene that they think they understand turns out to be performing other jobs than scientists expected.

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One way to sidestep this intricacy is to simplify.

In the 1990s, a team led by the late biologist Craig Venter began studying a microbe that had fewer than 1,000 genes. The team, now led by Dr. Glass, went on to strip the microbe’s genome down to 525 essential genes.

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In a 2016 paper, the team reported it didn’t know what a third of those genes were doing. Dr. Glass and his colleagues have spent the last decade trying to solve the puzzle, and they still can’t say what 56 of them do.

“There are still significant tasks that every cell has to do that we don’t know,” Dr. Glass said.

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Other researchers tackled the problem from the opposite direction. Instead of working from the top down, they moved from the bottom up, seeking to combine lifeless molecules to produce a living cell.

Since the 1990s, several labs have bitten off small pieces of this problem. Some of them have perfected recipes to make hollow bubbles from oily molecules. Others have found ways to encapsulate simple genetic molecules inside those bubbles.

But scientists struggled to put these pieces together into more complex systems, let alone something that could be called a cell.

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In recent years, Dr. Adamala took on one of the fundamental challenges: cell division. A natural cell divides with the help of proteins that lock together into a ring anchored to its inner wall. The ring winds itself tighter, pinching the cell in two.

Other proteins act like winches, moving DNA and other molecules into the forming cells, so that they have the ingredients necessary to keep living.

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At first, Dr. Adamala tried building a simpler version of the natural system. But then she decided not to mimic real cells at all.

Biophysicists had found that if they stuck proteins on a membrane, they created pressure that made the membrane bend. Dr. Adamala and her team created bubbles that could snag proteins floating around them. When a bubble collected enough proteins, its surface began bending inward until it popped in two.

While the idea was simple, getting it to work in the lab required a year of experiments. “But once it works, it works,” Dr. Adamala said.

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That success prompted the team to try to build a synthetic cell in its entirety.

The first step was to create a broth of the molecules necessary for a cell to operate. The recipe ultimately included about a hundred kinds of proteins and simple molecules required for crucial chemical reactions, such as making new proteins from genes.

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The researchers also provided their synthetic cell with genes borrowed from a virus and the ubiquitous microbe Escherichia coli. They picked 36 genes for basic jobs like copying DNA.

After mixing these ingredients together into a soup, the scientists added the building blocks of membranes. They spontaneously joined together into bubbles, each engulfing some of the soup.

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Many of these bubbles ended up encasing the right mix of genes, proteins and other molecules, and they started carrying out the chemical reactions seen in real cells.

As the new cells floated in flasks, Dr. Adamala and her colleagues added food. The cells slurped up small molecules through channels on their surfaces.

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The scientists also put in small bubbles loaded with proteins and other molecules that were too big to fit through the channels. By bumping and fusing into one of these bubbles, the cell could feed on the treats inside.

As the cells fed, they grew. And in just a few hours, they were big enough to divide.

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The scientists added a special protein to the flasks, which latched onto the surface of the cells and forced them to bend inward. Once the cells split in two, the pair of new cells kept growing.

Now the SpudCells grew, fed and reproduced. As it turned out, the cells even had a rudimentary ability to evolve.

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Dr. Adamala and her colleagues created a mutant version that bound more tightly to the snack-filled bubbles floating around it. To test it, they created a 50-50 mixture of original and mutant SpudCells.

The cells competed for five generations for food. Eventually the mutants outnumbered the originals, suggesting that they were outcompeting the originals for food.

“That’s the shake-the-ground accomplishment here,” said Dr. Zia. Scientists will be able to put various synthetic cells in competition with one another and rapidly develop more sophisticated ones.

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For all this evidence of life, SpudCell still has some major shortcomings. For starters, it can’t make the molecular factory that produces new proteins, called a ribosome. The cells can carry all the genes they need to build ribosomes, but for some reason the parts don’t come together.

For now, Dr. Adamala and her colleagues have to feed ready-made ribosomes to SpudCells. This solution has an expiration date, though: SpudCells can keep making proteins through five to 10 generations before they fail as their ribosomes become defective.

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“I don’t want to say it dies, but it stops working,” Dr. Adamala said.

When Dr. Adamala showed SpudCell to Dr. Endy last year, he was so awestruck that he decided to help her found Biotic, the nonprofit organization intended to create a community of SpudCell researchers.

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“I’m pouring my life’s work into this,” Dr. Endy said. One of the first tasks for Biotic will be to make it easier for other scientists to create SpudCells.

Dr. Adamala can create a fresh batch of them in her own lab in about a day. But that’s only because she has freezers full of purified proteins and an intimate understanding of each step of her recipe. Biotic expects to offer scientists easier recipes and provide the required ingredients.

Dr. Endy hopes that the open-source tools will encourage scientists to collaborate on building new kinds of SpudCells with more of the defining features of life, such as the ability to make their own ribosomes and to divide indefinitely.

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“It’s completely doable,” said Dr. Glass.

Biotic researchers are already planning their first meeting, in September in Philadelphia. High on their list of priorities will be formalizing plans to safeguard this area of research.

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For now, the synthetic cell can only survive a few generations on a special lab diet. But future versions may be more robust, raising the possibility that someone might someday use SpudCells unethically, perhaps even to make a weapon.

Dr. Endy argues that an open-source research community will be better prepared to prevent that from happening. “We can have these conversations now, as opposed to waiting for somebody else to do it, and then we’re just all reacting,” he said.

Dr. Endy likens SpudCells to a biological version of the Wright flyer, the crude plane that the Wright Brothers used to make the first sustained controlled flight in 1903, ushering in the age of airplanes.

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“The Wright flyer flying for 12 seconds doesn’t get you a 737,” Dr. Endy said. “This is just the beginning.”

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After bold pledge, EPA shelves microplastics testing in U.S. drinking water

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After bold pledge, EPA shelves microplastics testing in U.S. drinking water

For the next five years, the Environmental Protection Agency has indicated it will not require public water utilities to test for microplastics or pharmaceuticals in drinking water, according to a proposed rule published in the Federal Register.

On Friday, the EPA submitted a list of chemicals it plans to test for under the Unregulated Contaminant Monitoring Rule, a mandatory testing program used to collect information about concerning chemicals in drinking water that could be harming human health. It did not include microplastics or pharmaceuticals.

The omissions come after announcements by EPA Administrator Lee Zeldin earlier this year that his agency was designating microplastics and pharmaceuticals priority contaminants for testing.

“This is a direct response to the concern of millions of Americans who have long demanded answers about what they and their families are drinking every day,” he said at an April news conference with Health and Human Secretary Robert F. Kennedy Jr. at EPA headquarters.

Zeldin’s announcement was seen at the time as a move to placate the increasingly disgruntled Make America Healthy Again contingent of Trump supporters.

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Now the agency says it has no validated or standardized method to test for the plastic particles in drinking water, and wouldn’t be able to develop one before December, when testing is required to begin.

Among the 33 chemicals the EPA will require water utilities to test for are seven PFAS, or forever chemicals, and three pesticide residues.

It will be five years before the EPA proposes another list.

The EPA did not respond to a request for comment.

The agency noted in its proposed rule that it will collaborate with other federal agencies to “evaluate risks and exposures” of microplastics for future monitoring.

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Environmentalists reacted with frustration and resignation. They pointed out that the European Union has developed methods to test for the tiny plastic particles, which have been found in people’s blood, brains and lung tissue. California has one in the works.

“The California water board has spent a lot of time and money on how to measure in drinking water,” said Judith Enck, a former EPA regional administrator and president of the anti-plastic environmental group Beyond Plastics. “EPA should give them a call.”

California was required by a 2018 state law to establish a protocol for local water utilities to test for the particles in drinking water. The state has not yet begun reporting its results, but protocols were established in 2021. Blair Robertson, a spokesman for the State Water Resources Control Board, said it’s not “a fully validated, end-to-end regulatory method” yet.

At the April meeting, Zeldin announced that he would place microplastics on what is known as the Contaminant Candidate List, which acts as a preliminary “watch list” of unregulated, priority contaminants in drinking water. Like the mandatory monitoring list, it is updated only every five years. The most recent list was published on April 2 — the day he made his announcement.

“Americans have been ignored as they sound the alarm about plastics in their drinking water,” Zeldin said during the announcement. “That ends today by placing microplastics on the contaminant candidate list for the first time ever. EPA will follow the science, will pursue answers and will hold ourselves to the highest standards to protect the health of Americans.”

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There appears to be no clear association between these two lists, although the contaminant list is supposed to inform the monitoring list. Seventy-five chemicals and four chemical groups (microplastics, pharmaceuticals, PFAS chemicals, and disinfection byproducts) were listed on the 2026 contaminant list. Only seven of those chemicals were also on the proposed monitoring list (as well as seven PFAS chemicals).

When Zeldin announced microplastics as “‘a priority contaminant for regulation,’ and called it ‘a historic action on microplastics,’ he made it seem like the administration was going to take microplastics seriously,” said Mary Grant, water policy director for the environmental group Food & Water Watch.

“By not including them, they made it clear they don’t actually have plans to immediately address this crisis by getting the real-world monitoring data that we need right now to really start correcting ourselves,” she said.

Craig Davis, senior director of plastics chemistry at the American Chemistry Councilthe nation’s largest trade group for chemical companies — said that while his organization supports microplastic research, it also agrees with the EPA’s decision not to include them in the monitoring list.

“National drinking water monitoring should be based on validated, standardized methods that can produce reliable and comparable data,” said Davis in a statement. He said “limited” national monitoring resources should be focused where data can produce “actionable public health information.”

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The public has 60 days to comment once the plan is published in the Federal Register.

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Hospital visits for smoke inhalation spiked during Boyle Heights warehouse fire

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Hospital visits for smoke inhalation spiked during Boyle Heights warehouse fire

The number of Angelenos who went to the hospital with throat pain and concerns about smoke inhalation spiked as a fire burned through the massive Lineage cold storage warehouse in Boyle Heights this month, The Times has learned.

The blaze burned for eight days beginning June 17 and involved solar panels, insulation foam and other industrial materials.

During that time, more than three times as many people went to emergency departments within 10 miles of the warehouse mentioning the fire or smoke inhalation compared with the two weeks prior, according to data from the Los Angeles County Department of Public Health obtained through a public records request.

The agency also noted a near doubling of patients mentioning throat pain within five miles of the fire June 21 — 1.9 times the baseline levels.

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Usually, fewer than 50 people go to the emergency room each day for throat pain, and fewer than 20 people for smoke inhalation, the department said.

The hospitalization data was tracked through the department’s syndromic surveillance project, which monitors trends in what people report when they come to emergency departments in L.A. County, as well as diagnosis codes noted by providers. The system is not as comprehensive as full patient health records, and clinicians may not always include key words about “fire,” “smoke” or other circumstantial information in their diagnoses, the public health department said.

As such, it “cannot capture the true number of [emergency department] visits related to symptoms from the fire and likely underestimates the true burden of fire related symptoms,” the department said.

Perhaps unexpectedly, the department said it did not note a substantial increase in asthma, acute respiratory symptoms or chronic obstructive pulmonary disease-related emergency department visits during the fire.

But even these preliminary findings are concerning, experts said. The fire is believed to have started on the solar array on the roof of the 500,000 square-foot building, which housed 85 million pounds of frozen food. It then reached an ammonia line, prompting two brief shelter-in-place orders for nearby residents.

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Over the next week, the fire continued to burn through dense insulation foam within the building’s walls and other unknown industrial materials, blanketing much of L.A. in acrid smoke. Residents in downtown L.A., northeast L.A., Burbank, the San Gabriel Valley and many other parts of the city and county reported seeing and smelling the fumes.

The South Coast Air Quality Management District issued multiple warnings about unhealthy levels of PM 2.5, or fine particulate matter. The city and county opened two smoke respite shelters in the immediate area so that people could breath cleaner air.

It is still unclear what exactly was in the smoke that people breathed in. Industrial fires release far more materials than the burned wood smoke that is emitted during wildfires.

“The makeup of the smoke can include toxic chemicals, fine particles and other serious risks to lung health depending on fire conditions and what is burned,” Will Barrett, assistant vice president for nationwide clean air policy at the American Lung Assn., said as the fire was burning. Children and elderly people are particularly at risk.

David Eisenman, director of the UCLA Center for Public Health and Disasters, said urban industrial fires also can represent a hazard that standard PM 2.5 warnings don’t always address. Those advisories are “blunt instruments” that don’t adequately capture emissions from burning man-made goods — or convey that the source of pollution may include burning batteries or toxic refrigerants, he said.

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The fact that initial numbers don’t show a spike in asthma attacks is “somewhat reassuring,” Eisenman said. But “people may have gone to their primary care doctors, which this would not capture. This data deserves follow up.”

The air district and the U.S. Environmental Protection Agency deployed air monitors to assess particulate matter, airborne toxic metals and other harmful compounds during the early days of the blaze. The air district said it didn’t find significant levels of air toxics during the first two days of the fire, although it did record significantly elevated concentrations of particulate matter within the plume downwind.

Some of the measurements it took with mobile monitors, which are five-minute snapshots, also showed increased bromine and chlorine, which often are found when buildings burn and were at levels “below short-term health-based exposure thresholds,” the air district said. It began continuous PM 2.5. monitoring at two nearby elementary schools on the third day.

The L.A. Fire Department said it detected low-levels of toxic hydrogen fluoride on the second day of the fire, which can be a byproduct of burning lithium-ion batteries.

Lineage, the tenant-operator of the warehouse, said no concentrations of ammonia were detected in the air at any time.

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“There’s no doubt this fire has had a huge impact on the local community, and we are committed to showing up in every way we can,” company officials wrote in a statement last week. They said Lineage worked closely with the Fire Department during the blaze and delivered masks, air purifiers and other supplies to the community, and will work to ensure the fastest cleanup possible.

The long-term health effects of the fire and its smoke probably won’t be known unless researchers conduct a follow-up study, said Eisenman of UCLA.

For example, there may have been delayed pulmonary effects from the hydrogen fluoride and burning insulation foam that — when combined with the elevated PM 2.5 levels in a dense urban environment — produced health effects that didn’t show up in the emergency room data.

“They will show up in increased primary care office visits and exacerbations of chronic disease over the next few weeks,” he said. “So from a public health standpoint, this fire is not over.”

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