Science

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

Published

4 months ago

August 27, 2024

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.

(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

“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

How to protect yourself from the smoke caused by L.A. wildfires

Published

5 hours ago

January 9, 2025

Press Room

How to protect yourself from the smoke caused by L.A. wildfires

You don’t have to live close to a wildfire to be affected by its smoke. With severe winds fanning the fires in and around Pacific Palisades, the Pasadena foothills and Simi Valley, huge swaths of the Southland are contending with dangerous air quality.

Wildfire smoke can irritate your eyes, nose, throat and lungs. The soot may contain all kinds of dangerous pollutants, including some that may cause cancer. The tiniest particles in smoke can travel deep into your lungs or even enter your bloodstream.

Conditions like these aren’t good for anyone, but they’re particularly bad for people in vulnerable groups, including children, those with asthma or other respiratory conditions, people with heart disease and those who are pregnant.

Here’s what you should know to keep yourself safe.

Stay indoors

Minimize your exposure to unhealthy air by staying inside and keeping your doors and windows shut.

If you have a central heating and air conditioning system, you can keep your indoor air clean by turning it on and keeping it running. Make sure the fresh-air intake is closed so that you’re not drawing in outdoor air.

Keep your pets inside

They shouldn’t breathe the unhealthy air either.

Check your air filters

Clean filters work better than dirty ones, and high-efficiency filters work better than regular ones. The California Air Resources Board and the South Coast Air Quality Management District recommend filters with a MERV rating of 13 or higher.

You might consider using portable high-efficiency air cleaner in a room where you spend the most time. The U.S. Environmental Protection Agency has information about them here, and CARB has a list of certified cleaning devices here.

Don’t pollute your indoor air

That means no burning candles or incense. If your power is out and you need to see in the dark, you’re much better off with a flashlight or headlamp.

If you’re cold, bundle up. This is not the time to start a cozy fire in the fireplace. Don’t use a gas stove or wood-fired appliances, since these will make your indoor air quality worse, not better, the AQMD says.

The CDC also advises against vacuuming, since it can stir up dust and release fine particles into the air.

Take care when cleaning up

You don’t want your skin to come into contact with wildfire ash. That means you should wear long sleeves, pants, gloves, socks and shoes. The AQMD even wants you to wear goggles.

If you’re sweeping up ash outdoors, get a hose and mist it with water first. That will keep it from flying up in the air as you move it around. Once the ash is wet, sweep it up gently with a broom or mop. Bag it up in a plastic bag and throw it away.

It’s a good idea to wash your vehicles and outdoor toys if they’re covered in ash. Try not to send ashy water into storm drains. Direct the dirty water into ground areas instead, the AQMD advises.

Those with lung or heart problems should avoid clean-up activities.

Discard spoiled food…

If you lost power for a significant length of time, the food in your refrigerator or freezer may be spoiled.

Food kept in a fridge should stay safe for up to four hours if you’ve kept the door closed. If you’ve been without power for longer than that, you’ll need to toss all perishable items, including meat, poultry, fish, eggs, milk and cut fruits and vegetables. Anything with “an unusual smell, color, or texture” should be thrown out as well, according to the U.S. Centers for Disease and Control Prevention.

Refrigerated medicines should be OK unless the power was out for more than a day. Check the label to make sure.

…even if it was in the freezer

Your freezer may be in better shape, especially if it’s well-stocked. Items in a full freezer may be safe for up to 48 hours if it’s been kept shut, and a half-full freezer may be OK for up to 24 hours. (The frozen items help keep each other cold, so the more the better.)

If items have remained below 40 degrees Fahrenheit (4 degrees Celsius) or you can still see ice crystals in them, they may be OK to use or refreeze, according to the federal government’s food safety website.

Ice cream and frozen yogurt should be thrown out if the power goes out for any amount of time. Meat, poultry, seafood, eggs, milk and most other dairy products need to go if they were exposed to temperatures above 40 degrees F for two hours or longer. The same goes for frozen meals, casseroles, soups, stews and cakes, pies and pastries with custard or cheese fillings.

Fruit and fruit juices that have started to thaw can be refrozen unless they’ve started to get moldy, slimy or smell like yeast. Vegetables and vegetable juices should be discarded if they’ve been above 40 degrees F for six hours or more, even if they look and smell fine.

Breakfast items like waffles and bagels can be refrozen, as can breads, rolls, muffins and other baked goods without custard fillings.

Consider alternative shelter

If you’ve done everything you can but your eyes are still watering, you can’t stop coughing, or you just don’t feel well, seek alternative shelter where the air quality is better.

Hold off on vigorous exercise

Doing anything that would cause you to breathe in more deeply is a bad idea right now.

Mask up outdoors

If you need to be outside for an extended time, be sure to wear a high-quality mask. A surgical mask or cloth mask won’t cut it — health authorities agree that you should reach for an N95 or P-100 respirator with a tight seal.

Are young children at greater risk of wildfire smoke?

Very young children are especially vulnerable to the effects of wildfire smoke because their lungs are still rapidly developing. And because they breathe much faster than adults, they are taking in more toxic particulate matter relative to their tiny bodies, which can trigger inflammation, coughing and wheezing.

Any kind of air pollution can be dangerous to young children, but wildfire smoke is about 10 times as toxic for children compared to air pollution from burning fossil fuels, said Dr. Lisa Patel, clinical associate professor of pediatrics at Stanford Children’s Health. Young children with preexisting respiratory problems like asthma are at even greater risk.

Patel advises parents to keep their young children indoors as much as possible, create a safe room in their home with an air purifier, and try to avoid using gas stoves to avoid polluting the indoor air.

Children over the age of 2 should also wear a well-fitting KN95 mask if they will be outdoors for a long period of time. Infants and toddlers younger than that don’t need to mask up because it can be a suffocation risk, Patel said.

What are the risks for pregnant people?

Pregnant people should also take extra precautions around wildfire smoke, which can cross the placenta and affect a developing fetus. Studies have found that exposure to wildfire smoke during pregnancy can increase the risk of premature birth and low birth weight. Researchers have also linked the toxic chemicals in smoke with maternal health complications including hypertension and preeclampsia.

What about other high-risk populations?

Certain chronic diseases including asthma, chronic obstructive pulmonary disease or other respiratory conditions can also make you particularly vulnerable to wildfire smoke. People with heart disease, diabetes and chronic kidney disease should take extra care to breathe clean air, the CDC says. The tiny particles in wildfire smoke can aggravate existing health problems, and may make heart attacks or strokes more likely, CARB warns.

Get ready for the next emergency

Living in Southern California means another wildfire is coming sooner or later. To prepare for the bad air, you can:

Stock up on disposable respirators, like N95 or P-100s.
Have clean filters ready for your A/C system and change them out when things get smoky.
Know how to check the air quality where you live and work. The AQMD has an interactive map that’s updated hourly. Just type in an address and it will zoom in on the location. You can also sign up to get air quality alerts by email or on your smartphone.
Know where your fire extinguisher is and keep it handy.
If you have a heart or lung condition, keep at least five days’ worth of medication on hand.

Times staff writer Karen Garcia contributed to this report.

Science

Punk and Emo Fossils Are a Hot Topic in Paleontology

Published

12 hours ago

January 8, 2025

Press Room

Punk and Emo Fossils Are a Hot Topic in Paleontology

Mark Sutton, an Imperial College London paleontologist, is not a punk.

“I’m more of a folk and country person,” he said.

But when Dr. Sutton pieced together 3-D renderings of a tiny fossil mollusk, he was struck by the spikes that covered its wormlike body. “This is like a classic punk hairstyle, the way it’s sticking up,” he thought. He called the fossil “Punk.” Then he found a similar fossil with downward-tipped spines reminiscent of long, side-swept “emo” bangs. He nicknamed that specimen after the emotional alt-rock genre.

On Wednesday, Dr. Sutton and his colleagues published a paper in the journal Nature formally naming the creatures as the species Punk ferox and Emo vorticaudum. True to their names, these worm-mollusks are behind something of an upset (if not quite “anarchy in the U.K.”) over scientists’ understanding of the origins of one of the biggest groups of animals on Earth.

In terms of sheer number of species, mollusks are second only to arthropods (the group that contains insects, spiders and crustaceans). The better-known half of the mollusk family tree, conchiferans, contains animals like snails, clams and octopuses. “The other half is this weird and wacky group of spiny things,” Dr. Sutton said. Some animals in this branch, the aculiferans, resemble armored marine slugs, while others are “obscure, weird molluscan worms,” he said.

Punk and Emo, the forerunners of today’s worm-mollusks, lived on the dark seafloor amid gardens of sponges, nearly 200 million years before the first dinosaurs emerged on land. Today, their ancient seafloor is a fossil site at the border between England and Wales.

The site is littered with rounded rocky nodules that “look a bit like potatoes,” Dr. Sutton said. “And then you crack them open, and some of them have got these fossils inside. But the thing is, they don’t really look like much at first.”

While the nodules can preserve an entire animal’s body in 3-D, the cross-section that becomes visible when a nodule is cracked open can be difficult to interpret “because you’re not seeing the full anatomy,” Dr. Sutton said.

Paleontologists can use CT scans to see parts of fossils still hidden in rock, essentially taking thousands of X-rays of the fossil and then stitching those X-ray slices together into one digital 3-D image. But in these nodules, the fossilized creatures and the rock surrounding them are too similar in density to be easily differentiated by X-rays. Instead, Dr. Sutton essentially recreated this process of slicing and imaging by hand.

“We grind away a slice at a time, take a photo, repeat at 20-micron intervals or so, and basically destroy but digitize the fossil as we go,” Dr. Sutton said. At the end of the process, the original fossil nodule is “a sad-looking pile of dust,” but the thousands of images, when painstakingly digitally combined, provide a remarkable picture of the fossil animal.

Punk and Emo’s Hot Topic-worthy spikes set them apart from other fossils from the aculiferan branch of the mollusk family. “We don’t know much about aculiferans, and it’s unusual to find out we’ve suddenly got two,” Dr. Sutton said.

Stewart Edie, the curator of fossil bivalves at the Smithsonian National Museum of Natural History, said that Punk and Emo’s bizarre appearances shook up a long-held understanding of how mollusks evolved. Traditionally, scientists thought that the group of mollusks containing snails, clams and cephalopods “saw all of the evolutionary action,” said Dr. Edie, who was not involved with the new discovery. “And the other major group, the aculiferans, were considerably less adventurous.” But Punk and Emo “buck that trend,” he said.

The new alt-rock aculiferans reveal the hidden diversity of their group in the distant past and raise questions about why their descendants make up such a small part of the mollusk class today. “This is really giving us an almost unprecedented window into the sorts of things that were actually around when mollusks were getting going,” Dr. Sutton said. “It’s just this little weird, unexpected, really clear view of what was going on in the early history of one of the most important groups of animals.”

Science

FDA sets limits for lead in many baby foods as California disclosure law takes effect

Published

21 hours ago

January 8, 2025

Press Room

FDA sets limits for lead in many baby foods as California disclosure law takes effect

The U.S. Food and Drug Administration this week set maximum levels for lead in baby foods such as jarred fruits and vegetables, yogurts and dry cereal, part of an effort to cut young kids’ exposure to the toxic metal that causes developmental and neurological problems.

The agency issued final guidance that it estimated could reduce lead exposure from processed baby foods by about 20% to 30%. The limits are voluntary, not mandatory, for food manufacturers, but they allow the FDA to take enforcement action if foods exceed the levels.

It’s part of the FDA’s ongoing effort to “reduce dietary exposure to contaminants, including lead, in foods to as low as possible over time, while maintaining access to nutritious foods,” the agency said in a statement.

Consumer advocates, who have long sought limits on lead in children’s foods, welcomed the guidance first proposed two years ago, but said it didn’t go far enough.

“FDA’s actions today are a step forward and will help protect children,” said Thomas Galligan, a scientist with the Center for Science in the Public Interest. “However, the agency took too long to act and ignored important public input that could have strengthened these standards.”

The new limits on lead for children younger than 2 don’t cover grain-based snacks such as puffs and teething biscuits, which some research has shown contain higher levels of lead. And they don’t limit other metals such as cadmium that have been detected in baby foods.

The FDA’s announcement comes just one week after a new California law took effect that requires baby food makers selling products in California to provide a QR code on their packaging to take consumers to monthly test results for the presence in their product of four heavy metals: lead, mercury, arsenic and cadmium.

The change, required under a law passed by the California Legislature in 2023, will affect consumers nationwide. Because companies are unlikely to create separate packaging for the California market, QR codes are likely to appear on products sold across the country, and consumers everywhere will be able to view the heavy metal concentrations.

Although companies are required to start printing new packaging and publishing test results of products manufactured beginning in January, it may take time for the products to hit grocery shelves.

The law was inspired by a 2021 congressional investigation that found dangerously high levels of heavy metals in packaged foods marketed for babies and toddlers. Baby foods and their ingredients had up to 91 times the arsenic level, up to 177 times the lead level, up to 69 times the cadmium level, and up to five times the mercury level that the U.S. allows to be present in bottled or drinking water, the investigation found.

There’s no safe level of lead exposure for children, according to the U.S. Centers for Disease Control and Prevention. The metal causes “well-documented health effects,” including brain and nervous system damage and slowed growth and development. However, lead occurs naturally in some foods and comes from pollutants in air, water and soil, which can make it impossible to eliminate entirely.

The FDA guidance sets a lead limit of 10 parts per billion for fruits, most vegetables, grain and meat mixtures, yogurts, custards and puddings and single-ingredient meats. It sets a limit of 20 parts per billion for single-ingredient root vegetables and for dry infant cereals. The guidance covers packaged processed foods sold in jars, pouches, tubs or boxes.

Jaclyn Bowen, executive director of the Clean Label Project, an organization that certifies baby foods as having low levels of toxic substances, said consumers can use the new FDA guidance in tandem with the new California law: The FDA, she said, has provided parents a “hard and fast number” to consider a benchmark when looking at the new monthly test results.

But Brian Ronholm, director of food policy for Consumer Reports, called the FDA limits “virtually meaningless because they’re based more on industry feasibility and not on what would best protect public health.” A product with a lead level of 10 parts per billion is “still too high for baby food. What we’ve heard from a lot of these manufacturers is they are testing well below that number.”

The new FDA guidance comes more than a year after lead-tainted pouches of apple cinnamon puree sickened more than 560 children in the U.S. between October 2023 and April 2024, according to the CDC.

The levels of lead detected in those products were more than 2,000 times higher than the FDA’s maximum. Officials stressed that the agency doesn’t need guidance to take action on foods that violate the law.

Aleccia writes for the Associated Press. Gold reports for The Times’ early childhood education initiative, focusing on the learning and development of California children from birth to age 5. For more information about the initiative and its philanthropic funders, go to latimes.com/earlyed.