Science
'I don't want him to go': An autistic teen and his family face stark choices
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.
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Autism is a developmental condition that can shape how people think, communicate, move and process sensory information. When Noah was 3, a doctor noted he was a “very cute little boy” who played alone, rocked back and forth, and sometimes bit himself. Noah’s eye contact was “fleeting.” He could speak about 20 words, but often cried or pulled his mother’s hand to communicate.
The physician summed up his behavior as “characteristic of a DSM-IV diagnosis of autistic disorder.”
When he was in elementary school, LyBurtus stopped working full time outside the home and enrolled in a state program that paid her as his caregiver. She relies on Medi-Cal for his medical care, and much of his schooling has been in Orange County-run programs for children with moderate to severe disabilities.
Noah does not speak but sometimes uses pictures, an app on a tablet, or some sign language to communicate. When a reporter visited their home last year, Noah bobbed his head and shoulders as he listened to music on his iPad. He flapped his hands as LyBurtus made him a peanut-butter-and-banana smoothie, and then dutifully followed her instructions to chuck the peel and put the almond milk away. It was a good day, LyBurtus said with relief.
But on other days, LyBurtus said her son could be rigid; his demands, unpredictable. “Some days he’s fixated on having three pairs of pants on … Some days he wants to take seven showers. The next day, I can’t get him to take showers.”
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 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 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 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.”
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The fall and winter of 2022 were so trying that LyBurtus eventually took matters into her own hands. Noah bit his mother and smashed a bathroom window and tried to climb out before the Fullerton Fire Department arrived. Weeks later, LyBurtus had to dial 911 again after he bit his sister’s finger badly enough to draw blood.
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 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 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 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?”
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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.
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The October night before Noah left home, LyBurtus had brought home sushi for him, one of his favorite foods. He fell asleep around 6:30 p.m, and woke up again at 1 a.m. LyBurtus gave him his medication and as he drifted back to sleep, his mother held him, enjoying the peace.
When he woke up in the morning, she could tell he knew something was up. His clothes had been packed. She’d already shown him photos of the Costa Mesa home and told him, “This is where you’re going. I’m still your mom. I’m still going to go and see you.”
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 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 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.”
Science
California’s last nuclear plant clears major hurdle to power on
California environmental regulators on Thursday struck a landmark deal with Pacific Gas & Electric to extend the life of the state’s last remaining nuclear power plant in exchange for thousands of acres of new land conservation in San Luis Obispo County.
PG&E’s agreement with the California Coastal Commission is a key hurdle for the Diablo Canyon nuclear plant to remain online until at least 2030. The plant was slated to close this year, largely due to concerns over seismic safety, but state officials pushed to delay it — saying the plant remains essential for the reliable operation of California’s electrical grid. Diablo Canyon provides nearly 9% of the electricity generated in the state, making it the state’s single largest source.
The Coastal Commission voted 9-3 to approve the plan, settling the fate of some 12,000 acres that surround the power plant as a means of compensation for environmental harm caused by its continued operation.
Nuclear power does not emit greenhouse gases. But Diablo Canyon uses an estimated 2.5 billion gallons of ocean water each day to absorb heat in a process known as “once-through cooling,” which kills an estimated two billion or more marine organisms each year.
Some stakeholders in the region celebrated the conservation deal, while others were disappointed by the decision to trade land for marine impacts — including a Native tribe that had hoped the land would be returned to them. Diablo Canyon sits along one of the most rugged and ecologically rich stretches of the California coast.
Under the agreement, PG&E will immediately transfer a 4,500-acre parcel on the north side of the property known as the “North Ranch” into a conservation easement and pursue transfer of its ownership to a public agency such as the California Department of Parks and Recreation, a nonprofit land conservation organization or tribe. A purchase by State Parks would result in a more than 50% expansion of the existing Montaña de Oro State Park.
PG&E will also offer a 2,200-acre parcel on the southern part of the property known as “Wild Cherry Canyon” for purchase by a government agency, nonprofit land conservation organization or tribe. In addition, the utility will provide $10 million to plan and manage roughly 25 miles of new public access trails across the entire property.
“It’s going to be something that changes lives on the Central Coast in perpetuity,” Commissioner Christopher Lopez said at the meeting. “This matters to generations that have yet to exist on this planet … this is going to be a place that so many people mark in their minds as a place that transforms their lives as they visit and recreate and love it in a way most of us can’t even imagine today.”
Critically, the plan could see Diablo Canyon remain operational much longer than the five years dictated by Thursday’s agreement. While the state Legislature only authorized the plant to operate through 2030, PG&E’s federal license renewal would cover 20 years of operations, potentially keeping it online until 2045.
Should that happen, the utility would need to make additional land concessions, including expanding an existing conservation area on the southern part of the property known as the “South Ranch” to 2,500 acres. The plan also includes rights of first refusal for a government agency or a land conservation group to purchase the entirety of the South Ranch, 5,000 acres, along with Wild Cherry Canyon — after 2030.
Pelicans along the concrete breakwater at Pacific Gas and Electric’s Diablo Canyon Power Plant
(Brian van der Brug/Los Angeles Times)
Many stakeholders were frustrated by the carve-out for the South Ranch, but still saw the agreement as an overall victory for Californians.
“It is a once in a lifetime opportunity,” Sen. John Laird (D-Santa Cruz) said in a phone call ahead of Thursday’s vote. “I have not been out there where it has not been breathtakingly beautiful, where it is not this incredible, unique location, where you’re not seeing, for much of it, a human structure anywhere. It is just one of those last unique opportunities to protect very special land near the California coast.”
Others, however, described the deal as disappointing and inadequate.
That includes many of the region’s Native Americans who said they felt sidelined by the agreement. The deal does not preclude tribal groups from purchasing the land in the future, but it doesn’t guarantee that or give them priority.
The yak titʸu titʸu yak tiłhini Northern Chumash Tribe of San Luis Obispo County and Region, which met with the Coastal Commission several times in the lead-up to Thursday’s vote, had hoped to see the land returned to them.
Scott Lanthrop is a member of the tribe’s board and has worked on the issue for several years.
“The sad part is our group is not being recognized as the ultimate conservationist,” he told The Times. “Any normal person, if you ask the question, would you rather have a tribal group that is totally connected to earth and wind and water, or would you like to have some state agency or gigantic NGO manage this land, I think the answer would be, ‘Hey, you probably should give it back to the tribe.’”
Tribe chair Mona Tucker said she fears that free public access to the land could end up harming it instead of helping it, as the Coastal Commission intends.
“In my mind, I’m not understanding how taking the land … is mitigation for marine life,” Tucker said. “It doesn’t change anything as far as impacts to the water. It changes a lot as far as impacts to the land.”
Montaña de Oro State Park.
(Christopher Reynolds / Los Angeles Times)
The deal has been complicated by jurisdictional questions, including who can determine what happens to the land. While PG&E owns the North Ranch parcel that could be transferred to State Parks, the South Ranch and Wild Cherry Canyon are owned by its subsidiary, Eureka Energy Company.
What’s more, the California Public Utilities Commission, which regulates utilities such as PG&E, has a Tribal Land Transfer Policy that calls for investor-owned power companies to transfer land they no longer want to Native American tribes.
In the case of Diablo Canyon, the Coastal Commission became the decision maker because it has the job of compensating for environmental harm from the facility’s continued operation. Since the commission determined Diablo’s use of ocean water can’t be avoided, it looked at land conservation as the next best method.
This “out-of-kind” trade-off is a rare, but not unheard of way of making up for the loss of marine life. It’s an approach that is “feasible and more likely to succeed” than several other methods considered, according to the commission’s staff report.
“This plan supports the continued operation of a major source of reliable electricity for California, and is in alignment with our state’s clean energy goals and focus on coastal protection,” Paula Gerfen, Diablo Canyon’s senior vice president and chief nuclear officer, said in a statement.
But Assemblymember Dawn Addis (D-Morro Bay) said the deal was “not the best we can do” — particularly because the fate of the South Ranch now depends on the plant staying in operation beyond 2030.
“I believe the time really is now for the immediate full conservation of the 12,000 [acres], and to bring accountability and trust back for the voters of San Luis Obispo County,” Addis said during the meeting.
There are also concerns about the safety of continuing to operate a nuclear plant in California, with its radioactive waste stored in concrete casks on the site. Diablo Canyon is subject to ground shaking and earthquake hazards, including from the nearby Hosgri Fault and the Shorline Fault, about 2.5 miles and 1 mile from the facility, respectively.
PG&E says the plant has been built to withstand hazards. It completed a seismic hazard assessment in 2024, and determined Diablo Canyon is safe to continue operation through 2030. The Coastal Commission, however, found if the plant operates longer, it would warrant further seismic study.
A key development for continuing Diablo Canyon’s operation came in 2022 with Senate Bill 846, which delayed closure by up to five additional years. At the time, California was plagued by rolling blackouts driven extreme heat waves, and state officials were growing wary about taking such a major source of power offline.
But California has made great gains in the last several years — including massive investments in solar energy and battery storage — and some questioned whether the facility is still needed at all.
Others said conserving thousands of acres of land still won’t make up for the harms to the ocean.
“It is unmitigatable,” said David Weisman, executive director of the nonprofit Alliance for Nuclear Responsibility. He noted that the Coastal Commission’s staff report says it would take about 99 years to balance the loss of marine life with the benefits provided by 4,500 acres of land conservation. Twenty more years of operation would take about 305 years to strike that same balance.
But some pointed out that neither the commission nor fisheries data find Diablo’s operations cause declines in marine life. Ocean harm may be overestimated, said Seaver Wang, an oceanographer and the climate and energy director at the Breakthrough Institute, a Berkeley-based research center.
In California’s push to transition to clean energy, every option comes with downsides, Wang said. In the case of nuclear power — which produces no greenhouse gas emissions — it’s all part of the trade off, he said.
“There’s no such thing as impacts-free energy,” he said.
The Coastal Commission’s vote is one of the last remaining obstacles to keeping the plant online. PG&E will also need a final nod from the Regional Water Quality Control Board, which decides on a pollution discharge permit in February.
The federal Nuclear Regulatory Commission will also have to sign off on Diablo’s extension.
Science
In search for autism’s causes, look at genes, not vaccines, researchers say
Earlier this year, Health and Human Services Secretary Robert F. Kennedy Jr. pledged that the search for autism’s cause — a question that has kept researchers busy for the better part of six decades — would be over in just five months.
“By September, we will know what has caused the autism epidemic, and we’ll be able to eliminate those exposures,” Kennedy told President Trump during a Cabinet meeting in April.
That ambitious deadline has come and gone. But researchers and advocates say that Kennedy’s continued fixation on autism’s origins — and his frequent, inaccurate claims that childhood vaccines are somehow involved — is built on fundamental misunderstandings of the complex neurodevelopmental condition.
Even after more than half a century of research, no one yet knows exactly why some people have autistic traits and others do not, or why autism spectrum disorder looks so different across the people who have it. But a few key themes have emerged.
Researchers believe that autism is most likely the result of a complex set of interactions between genes and the environment that unfold while a child is in the womb. It can be passed down through families, or originate with a spontaneous gene mutation.
Environmental influences may indeed play a role in some autism cases, but their effect is heavily influenced by a person’s genes. There is no evidence for a single trigger that causes autism, and certainly not one a child encounters after birth: not a vaccine, a parenting style or a post-circumcision Tylenol.
“The real reason why it’s complicated, the more fundamental one, is that there’s not a single cause,” said Irva Hertz-Picciotto, a professor of public health science and director of the Environmental Health Sciences Center at UC Davis. “It’s not a single cause from one person to the next, and not a single cause within any one person.”
Kennedy, an attorney who has no medical or scientific training, has called research into autism’s genetics a “dead end.” Autism researchers counter that it’s the only logical place to start.
“If we know nothing else, we know that autism is primarily genetic,” said Joe Buxbaum, a molecular neuroscientist who directs the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai. “And you don’t have to actually have the exact genes [identified] to know that something is genetic.”
Some neurodevelopment disorders arise from a difference in a single gene or chromosome. People with Down syndrome have an extra copy of chromosome 21, for example, and Fragile X syndrome results when the FMR1 gene isn’t expressed.
Autism in most cases is polygenetic, which means that multiple genes are involved, with each contributing a little bit to the overall picture.
Researchers have found hundreds of genes that could be associated with autism; there may be many more among the roughly 20,000 in the human genome.
In the meantime, the strongest evidence that autism is genetic comes from studies of twins and other sibling groups, Buxbaum and other researchers said.
The rate of autism in the U.S. general population is about 2.8%, according to a study published last year in the journal Pediatrics. Among children with at least one autistic sibling, it’s 20.2% — about seven times higher than the general population, the study found.
Twin studies reinforce the point. Both identical and fraternal twins develop in the same womb and are usually raised in similar circumstances in the same household. The difference is genetic: identical twins share 100% of their genetic information, while fraternal twins share about 50% (the same as nontwin siblings).
If one fraternal twin is autistic, the chance that the other twin is also autistic is about 20%, or about the same as it would be for a nontwin sibling.
But if one in a pair of identical twins is autistic, the chance that the other twin is also autistic is significantly higher. Studies have pegged the identical twin concurrence rate anywhere from 60% to 90%, though the intensity of the twins’ autistic traits may differ significantly.
Molecular genetic studies, which look at the genetic information shared between siblings and other blood relatives, have found similar rates of genetic influence on autism, said Dr. John Constantino, a professor of pediatrics, psychiatry and behavioral sciences at the Emory University School of Medicine and chief of behavioral and mental health at Children’s Healthcare of Atlanta.
Together, he said, “those studies have indicated that a vast share of the causation of autism can be traced to the effects of genetic influences. That is a fact.”
Buxbaum compares the heritability of autism to the heritability of height, another polygenic trait.
“There’s not one gene that’s making you taller or shorter,” Buxbaum said. Hundreds of genes play a role in where you land on the height distribution curve. A lot of those genes run in families — it’s not unusual for very tall people, for example, to have very tall relatives.
But parents pass on a random mix of their genes to their children, and height distribution across a group of same-sex siblings can vary widely. Genetic mutations can change the picture. Marfan syndrome, a condition caused by mutations in the FBN1 gene, typically makes people grow taller than average. Hundreds of genetic mutations are associated with dwarfism, which causes shorter stature.
Then once a child is born, external factors such as malnutrition or disease can affect the likelihood that they reach their full height potential.
So genes are important. But the environment — which in developmental science means pretty much anything that isn’t genetics, including parental age, nutrition, air pollution and viruses — can play a major role in how those genes are expressed.
“Genetics does not operate in a vacuum, and at the same time, the impact of the environment on people is going to depend on a person’s individual genetics,” said Brian K. Lee, a professor of epidemiology and biostatistics at Drexel University who studies the genetics of developmental disorders.
Unlike the childhood circumstances that can affect height, the environmental exposures associated with autism for the most part take place in utero.
Researchers have identified multiple factors linked to increased risks of the disorder, including older parental age, infant prematurity and parental exposure to air pollution and industrial solvents.
Investigations into some of these linkages were among the more than 50 autism-related studies whose funding Kennedy has cut since taking office, a ProPublica investigation found. In contrast, no credible study has found links between vaccines and autism — and there have been many.
One move from the Department of Health and Human Services has been met with cautious optimism: even as Kennedy slashed funding to other research projects, the department in September announced a $50-million initiative to explore the interactions of genes and environmental factors in autism, which has been divided among 13 different research groups at U.S. universities, including UCLA and UC San Diego.
The department’s selection of well-established, legitimate research teams was met with relief by many autism scientists.
But many say they fear that such decisions will be an anomaly under Kennedy, who has repeatedly rejected facts that don’t conform to his preferred hypotheses, elevated shoddy science and muddied public health messaging on autism with inaccurate information.
Disagreements are an essential part of scientific inquiry. But the productive ones take place in a universe of shared facts and build on established evidence.
And when determining how to spend limited resources, researchers say, making evidence-based decisions is vital.
“There are two aspects of these decisions: Is it a reasonable expenditure based on what we already know? And if you spend money here, will you be taking money away from HHS that people are in desperate need of?” Constantino said. “If you’re going to be spending money, you want to do that in a way that is not discarding what we already know.”
Science
Contributor: New mothers are tempted by Ozempic but don’t have the data they need
My friend Sara, eight weeks after giving birth, left me a tearful voicemail. I’m a clinical psychologist specializing in postpartum depression and psychosis, but mental health wasn’t Sara’s issue. Postpartum weight gain was.
Sara told me she needed help. She’d gained 40 pounds during her pregnancy, and she was still 25 pounds overweight. “I’m going back to work and I can’t look like this,” she said. “I need to take Ozempic or something. But do you know if it’s safe?”
Great question. Unfortunately researchers don’t yet have an answer. On Dec. 1, the World Health Organization released its first guidelines on the use of GLP-1 receptor agonists such as Ozempic, generically known as semaglutide. One of the notable policy suggestions in that report is to not prescribe GLP-1s to pregnant women. Disappointingly, the report says nothing about the use of the drug by postpartum women, including those who are breastfeeding.
There was a recent Danish study that led to medical guidelines against prescribing to patients who are pregnant or breastfeeding.
None of that is what my friend wanted to hear. I could only encourage her to speak to her own medical doctor.
Sara’s not alone. I’ve seen a trend emerging in my practice in which women use GLP-1s to shed postpartum weight. The warp speed “bounce-back” ideal of body shapes for new mothers has reemerged, despite the mental health field’s advocacy to abolish the archaic pressure of martyrdom in motherhood. GLP-1s are being sold and distributed by compound pharmacies like candy. And judging by their popularity, nothing tastes sweeter than skinny feels.
New motherhood can be a stressful time for bodies and minds, but nature has also set us up for incredible growth at that moment. Contrary to the myth of spaced-out “mommy brains,” new neuroplasticity research shows that maternal brains are rewired for immense creativity and problem solving.
How could GLP-1s affect that dynamic? We just don’t know. We do know that these drugs are associated with changes far beyond weight loss, potentially including psychiatric effects such as combating addiction.
Aside from physical effects, this points to an important unanswered research question: What effects, if any, do GLP-1s have on a woman’s brain as it is rewiring to attune to and take care of a newborn? And on a breastfeeding infant? If GLP-1s work on the pleasure center of the brain and your brain is rewiring to feel immense pleasure from a baby coo, I can’t help but wonder if that will be dampened. When a new mom wants a prescription for a GLP-1 to help shed baby weight, her medical provider should emphasize those unknowns.
These drugs may someday be a useful tool for new mothers. GLP-1s are helping many people with conditions other than obesity. A colleague of mine was born with high blood pressure and cholesterol. She exercised every day and adopted a pescatarian diet. Nothing budged until she added a GLP-1 to her regimen, bringing her blood pressure to a healthy 120/80 and getting cholesterol under control. My brother, an otherwise healthy young man recently diagnosed with a rare idiopathic lymphedema of his left leg, is considering GLP-1s to address inflammation and could be given another chance at improving his quality of life.
I hope that GLP-1s will continue to help those who need it. And I urge everyone — especially new moms — to proceed with caution. A healthy appetite for nutritious food is natural. That food fuels us for walks with our dogs, swims along a coastline, climbs through leafy woods. It models health and balance for the young ones who are watching us for clues about how to live a healthy life.
Nicole Amoyal Pensak, a clinical psychologist and researcher, is the author of “Rattled: How to Calm New Mom Anxiety With the Power of the Postpartum Brain.”
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