Science
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.
“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.
“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
An industrial chemical is showing up in fentanyl in the U.S., troubling scientists
An industrial chemical used in plastic products has been cropping up in illegal drugs from California to Maine, a sudden and puzzling shift in the drug supply that has alarmed health researchers.
Its name is bis(2,2,6,6-tetramethyl-4-piperidyl) sebacate, commonly abbreviated as BTMPS. The chemical is used in plastic for protection against ultraviolet rays, as well as for other commercial uses.
In an analysis released Monday, researchers from UCLA, the National Institute of Standards and Technology (NIST) and other academic institutions and harm reduction groups collected and tested more than 170 samples of drugs that had been sold as fentanyl in Los Angeles and Philadelphia this summer. They found roughly a quarter of the drugs contained BTMPS.
Researchers called it the most sudden change in the U.S. illegal drug supply in recent history, based on chemical prevalence. They found that BTMPS sometimes dramatically exceeded the amount of fentanyl in drug samples and, in some cases, had made up more than a third of the drug sample.
It was also a growing presence in fentanyl over the summer: In June, none of the L.A. fentanyl samples tested by the team contained BTMPS, the analysis found. By August, it was detected in 41% of them.
“This is effectively unprecedented,” said Morgan Godvin, one of the authors of the study and project director for Drug Checking Los Angeles, a UCLA project that works in partnership with the L.A. County Department of Public Health to analyze illicit drugs.
“We have no idea just how many people have been exposed,” Godvin said, but if the high prevalence among drug samples tested so far is any indication, “that translates to tens of thousands of fentanyl users being exposed to BTEMPS, sometimes at very high volume.”
The findings were publicly released as a preprint — research that has not been peer reviewed — on the website of Drug Checking Los Angeles and have been submitted to medRxiv, a website where scientists share preliminary findings.
BTMPS has been studied in rats for its potential to reduce withdrawal symptoms from morphine and affect nicotine use, but it can be toxic and even deadly to rodents at sufficient doses, and health researchers say there is an urgent need for more studies on its effects on the human body.
The PubChem database lists a number of possible hazards associated with BTMPS, including skin irritation and eye damage. Godvin was alarmed by animal studies indicating dangers from inhaling BTMPS — such as tremors and shortness of breath — because smoking is now common in L.A. among people who use fentanyl.
People who use drugs have said that BTMPS can smell like bug spray or plastic and have reported blurred vision, nausea and coughing after ingesting it. One told researchers that “it smelled so bad I could barely smoke it.” The UCLA and NIST researchers warned that “with such a sudden and sustained prevalence in the drug supply, users are at risk of repeated, ongoing exposures, which may compound health effects.”
A 35-year-old man in Los Angeles said that in recent months, he had noticed a rubbery or synthetic taste in the fentanyl he used. “I was asking my friend that I buy from, ‘What the hell is this?’” said the man, who requested anonymity to speak about his drug use.
When he took samples that were supposed to be fentanyl to Drug Checking Los Angeles to analyze, he learned that some contained the strange chemical. The 35-year-old said he now tries to avoid BTMPS, but “a lot of people are just trying to get anything to keep from being sick” from opioid withdrawal.
Whatever clandestine labs are doing, he said, “we’re the guinea pigs.”
L.A. and Philadelphia are far from the only places where the chemical has popped up: The team also detected BTMPS in trace amounts of drugs left behind on drug paraphernalia from other locations, including Delaware, Maryland and Nevada.
As of last week, a University of North Carolina program that tests drug samples from across the country had also found BTMPS in more than 200 samples from a dozen states stretching from the West Coast to Maine. UNC senior scientist Nabarun Dasgupta said the chemical began showing up in drug samples that it tested this summer, most often mingled with fentanyl, both in powder form and in fake pills.
Alex Krotulski, a director at the nonprofit Center for Forensic Science Research and Education in Pennsylvania, said the amount of BTMPS found in drug samples it has tested varies dramatically — sometimes making up a small amount, sometimes amounting to the “primary component” in the sample.
Unlike other adulterants added to fentanyl for their psychoactive effects, “it’s not like it’s something that you go out and you use a bunch of to get high,” Krotulski said. The UCLA and NIST team found that people who use drugs rated samples high in BTMPS as “bunk” — low in quality — and broadly saw it as “highly undesirable.”
Yet another oddity is that BTMPS has not followed a familiar path for new drugs in the U.S. Instead of showing up in one area and spreading to others, “this one has hit all at once across the U.S. within a two-week period,” said Tara Stamos-Buesig, founder and chief executive of the Harm Reduction Coalition of San Diego.
Stamos-Buesig, whose group helps analyze the contents of illegal drugs in San Diego to inform and protect people, said that “I’ve told people for a while — we can’t hyper-focus on fentanyl” as if it were the only threat.
“There’s a lot of other stuff coming on board,” Stamos-Buesig said.
The UCLA and NIST analysis suggested one possible scenario: Illegal drug manufacturers might be adding BTMPS to fentanyl precursors or to the final product “at a high level in the supply chain,” possibly to stabilize them from degrading from light or heat exposure as illicit drugs are made, stored and transported, they wrote.
UCLA assistant professor Chelsea Shover added that the team had found BTMPS for sale on online platforms like Amazon and Alibaba with similar wording to what Chinese chemical companies had used in the past to market to fentanyl producers, with sellers touting their “experience getting through Mexican customs.”
“This is clearly implying that this is to be used to make illicit drugs,” Shover said. “It’s stuff you wouldn’t expect to see if it was just selling an industrial chemical in a standard way.”
As it stands, there is no test strip that can quickly detect BTMPS as there is for fentanyl. Nor is the chemical routinely tested for by doctors or medical examiners, which means that if someone has been harmed by BTMPS they took accidentally, “clinicians would have no way of knowing,” the UCLA and NIST team wrote.
The UNC Street Drug Analysis Lab likewise said that much remains unknown at this point, including whether BTMPS poses an overdose risk, although the lab cautions that “EVERY substance at some volume will be toxic.”
Dasgupta said the detection of BTMPS represents the first example of the burgeoning network of drug checking programs working together to find a substance “before any health authorities or any law enforcement did.” Godvin said that “just a few years ago, we wouldn’t have even known about this” and urged Angelenos to get drugs analyzed through Drug Checking Los Angeles if they are able.
In a drug supply already riddled with threats like fentanyl and the animal tranquilizer xylazine, “this gives us a whole other thing to worry about,” Godvin said.
Science
How AI can help researchers make esophageal cancer less deadly
Approximately 600 times a day, the esophagus ferries whatever is in your mouth down to your stomach. It’s usually a one-way route, but sometimes acid escapes the stomach and travels back up. That can damage the cells lining the esophagus, prompting them to grow back with genetic mistakes.
About 22,370 times a year in the United States, those mistakes culminate in cancer.
Esophageal cancer can be cured if it’s discovered and treated before it burrows in deep or spreads to other organs. But that’s rarely the case.
“The way this usually goes is a patient has had reflux symptoms for many years, they’ve taken Tums or something, and then all of a sudden they have difficulty swallowing so they come to the ER,” said Dr. Allon Kahn, a gastroenterologist and associate professor of medicine at the Mayo Clinic in Arizona. That’s when doctors discover a tumor that has grown into the walls of the esophagus, and likely beyond.
“At that point,” Kahn said, “it’s incurable.”
This is why only about 20% of Americans with esophageal cancer are still alive five years after their diagnosis. To improve on that figure, doctors say they don’t necessarily need better medicines. What they need are better ways to find the cancer while it’s still in its earliest, highly treatable stages.
And to do that, they need a breakthrough in screening for the disease.
“The concept of screening is to find dangerous things before they do dangerous things,” said Dr. Daniel Boffa, chief of thoracic surgery at Yale.
It works for diseases like breast, lung and colon cancer. In those cases, there’s a clear progression of steps that leads to cancer — and only to cancer.
But that doesn’t seem to be the case with esophageal cancer.
“We don’t really know who to screen, how often to screen, and what is the thing that we can see that will tell us, ‘This person is going to develop a dangerous cancer,’” Boffa said.
He likened the situation to the difficulty of forecasting a tornado.
“Most tornadoes happen when conditions are favorable for a tornado,” he said. “But most of the time that conditions are favorable for a tornado, there’s not a tornado. And a lot of the time, tornadoes happen outside of those conditions.”
Another complicating factor is that cases of esophageal cancer are rare, accounting for about 1% of all cancers diagnosed in the U.S.
Picture the 100,000 college football fans packed into Michigan Stadium in Ann Arbor on a game day, said Dr. Joel Rubenstein, a research scientist based 3 miles away at the Lt. Col. Charles S. Kettles VA Medical Center and a gastroenterologist at the University of Michigan. Then picture yourself having to figure out which four of those fans will develop esophageal cancer this year.
Screening someone for esophageal cancer is not a trivial procedure.
The standard method involves inserting an endoscope — a flexible tube with a camera on one end — into a patient’s throat and threading it down to the stomach. The camera allows doctors to inspect the esophagus up close and check for abnormal cells that could become cancerous.
The tube also serves as a conduit for tools that can collect tissue samples, which can be sent to a pathology lab for diagnostic analysis. If a doctor sees a growth that looks like early-stage cancer, it can be removed on the spot.
It sounds straightforward, but patients must be sedated for the procedure, which means they lose a day of work. Endoscopy is also expensive, and there’s a shortage of doctors who can do it.
“We’re only catching 7% of cancers through endoscopy,” Kahn said. “We’ve got to find a way to increase that number.”
In the U.S., the most common form of the cancer begins at the base of the esophagus. The cells there aren’t built to withstand exposure to stomach acid, so in people with chronic acid reflux, they sometimes adapt by becoming more like intestinal tissue. That condition is called Barrett’s esophagus, and about 5% of U.S. adults have it.
“If that’s all that was, we’d say, ‘That’s great,’” Kahn said. “But unfortunately, when it makes that change in cell type, there are genetic changes that predispose a patient to cancer.”
About 0.3% of people with Barrett’s esophagus develop esophageal cancer each year, said Dr. Sachin Wani, a gastroenterologist and professor at the University of Colorado School of Medicine. And compared to people without Barrett’s, they are roughly nine times more likely to die of esophageal cancer.
That means screening for Barrett’s is tantamount to screening for esophageal cancer.
Doctors largely agree on a core group of risk factors, including chronic gastroesophageal reflux disease, smoking and carrying extra pounds in the abdomen. Other risk factors include being at least 50 years old, male, white and having a family history of either Barrett’s or esophageal cancer.
There is less agreement about how many risk factors a person must have to justify screening.
Based on recommendations from the American College of Gastroenterology, more than 31 million people are eligible for screening. Guidelines from the American Society for Gastrointestinal Endoscopy raise that figure to 52 million, and the American Gastroenterological Assn.’s advice expands it to 120 million, said Dr. Gary Falk, a gastroenterologist and professor of medicine emeritus at the University of Pennsylvania’s Perelman School of Medicine.
All of these recommendations leave room for improvement. Only 50% to 60% of people who meet screening requirements actually have Barrett’s, said Dr. Prasad Iyer, the chair of gastroenterology at the Mayo Clinic in Arizona.
“The screening criteria are not accurate enough,” he said.
Indeed, at least 90% of people who have risk factors for Barrett’s don’t actually have the condition, Iyer said. That includes the vast majority of people with acid reflux.
So doctors are turning to artificial intelligence to identify additional characteristics that can improve their ability to identify those most likely to have Barrett’s and esophageal cancer.
“Everyone in medicine is looking at AI,” Falk said. “We think it’s going to revolutionize things.”
Iyer and his colleagues are developing an AI tool that scours the electronic medical records of Mayo Clinic patients to find those who should be screened for Barrett’s. The tool considers more than 7,500 distinct data points, including past medical procedures, lab test results, prescriptions and more. (Among the surprises: A patient’s triglycerides and electrolytes had predictive value.)
“This is probably something a human would not be able to do efficiently,” Iyer said.
In tests, the overall accuracy of both tools was 84%. While those are substantial improvements, the team would like to bump that up to 90% before they are rolled out in the clinic, Iyer said.
Rubenstein and his colleagues in Michigan created something similar, using machine learning techniques to analyze the health records of VA patients across the country. Their tool also performed better than the official guidelines of medical societies, with an accuracy of 77%. Now the team is working to refine its threshold for screening by adding cost-effectiveness to the mix.
Once in use, tools like these could lighten the load of overburdened primary care doctors, who aren’t necessarily up to date on the latest screening guidelines and refer fewer than half of their eligible patients for testing.
“It will flag a patient and say, ‘This patient should be screened,’ or, ‘This patient should not be screened,’” Iyer said. “That’s what the future really needs.”
Science
Just out of high school and blockading the door to JD Vance's office
When Camp Hess Kramer burned down in 2018, I cried. My family had gone to the summer camp for generations. My grandma won the “best camper” award in the same dining hall where I tried soda for the first time. Overnight, it was gone. The place I grew up, once ringing with songs and laughter, had mutated into a black abyss strewn with the wiry corpses of oak trees.
It was one of the worst fire seasons in California history. Entire towns and many lives were lost.
In 2020, when COVID hit, I was just about to finish middle school. Instead of playing Magic: The Gathering with my friends in the hallways, I stared into my computer screen consuming information about the climate crisis. Feelings of terror morphed into anger. Decades of warning signs had been ignored because big oil was buying out politicians. These disasters were preventable; Hess Kramer didn’t have to burn.
So, I signed up for every climate organization I could find online. My first meeting with the Sunrise Movement’s new Los Angeles youth hub was filled with the intimidating faces of high school seniors. I saw the gleam in their eyes as they talked about a future where everyone had a right to clean air, clean water, and good and meaningful jobs. They led protests and created spreadsheets and cold-called people — things I had no idea how to do.
I was 15 when Sunrise asked me to help lead the local portion of a campaign for a national Civilian Climate Corps. The idea was to push the federal government to create a program employing young people in good-paying jobs fighting the climate crisis.
Soon I was planning a sit-in at Sen. Dianne Feinstein’s Los Angeles office. It was 2021. We slept on the sidewalk for two nights until Feinstein agreed to support the program. Then we demanded a Zoom meeting with Sen. Alex Padilla to get his support too. Around the country for many years, our movement continued to push for a Civilian Climate Corps. In June, the first cohort of 9,000 young people were sworn in by the White House.
But fire season is here, and the places I love are still in danger and my future is still uncertain. We could be looking at four years with a presidential administration that is in the pocket of fossil fuel billionaires.
On July 29, eight of us blockaded the wooden door of JD Vance’s Senate office in Washington. Many more Sunrisers lined the marble hallways. Young people from all walks of life sang in unison: “I went up to JD Vance and I took back my humanity/ Ain’t nobody gonna walk all over me.”
In 2020, Vance, now a potential vice president, asserted that climate change was a threat. Yet after receiving nearly $300,000 from the fossil fuel industry during his 2022 Senate campaign, Vance seems to no longer believe this crisis is human-made.
Police began shoving their way through the crowd toward the door. Handcuffs dangled by their side. I wanted to run, but as the police gave their third warning, I remembered why I was here: An image of Camp Hess Kramer flashed through my head.
I was taken outside with my hands behind my back. I was told I was under arrest, alone in a sea of blue uniforms, but in the distance I heard 150 Sunrisers break out into another song. I could just make out the words. “Where you go, I will go, Simon. Where you go, I will go.”
Simon Aron is a freshman at Brown University, where he plans to continue his activism.
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