Category: Washington Post

FAIRVIEW, North Carolina — A dusting of December snow had turned the mountains around her white, but Elizabeth Clark barely had time to notice.

It had been 438 days since Hurricane Helene’s floodwaters wrecked her home’s foundation, inundated the first floor, destroyed the septic system and swallowed their belongings. Her mortgage company agreed to pause her payments for a year, but now seemed to be losing patience over the $270,000 she still owed on a house no longer safe to live in.

“I’ve never missed a payment in my whole life,” said Clark, a neonatal nurse at a nearby hospital. “Here now, at 42 years old, I’m having to consider foreclosing.”

In November 2024, Clark was among the first storm victims in her county to apply for a voluntary program funded by the Federal Emergency Management Agency that would enable the government to buy out her property.

Not only can qualified homeowners get the pre-storm value of their house — and the chance to move on with their lives — but the program is meant to help at-risk communities reduce future disaster losses by getting the most vulnerable structures permanently out of harm’s way.

After the storm, Clark and her husband, Calvin, spent weeks living in a hotel, before renting a home from friends for eight months. Finally, they moved nearly an hour away to a small house in Waynesville, N.C., that they had been leasing to tenants. It feels cramped with their three school-aged children, and each day brings hours on the road to return to the community where their kids go to school, play sports, and visit grandparents. The loss of renters has been another financial hit.

Meanwhile, more than 13 months after applying for a buyout, Clark has heard almost nothing definitive.

She is hardly the only one enduring another winter of uncertainty.

More than 800 storm victims around Helene-battered western North Carolina have applied under FEMA’s Hazard Mitigation Grant Program. State officials vetted applications and began sending them up the chain to FEMA as far back as February. As of Dec. 15, they had sent nearly 600 buyout requests to Washington, with more likely to follow.

So far, they say, not a single approval has come through.

North Carolina Gov. Josh Stein has called the paralysis “absolutely unacceptable,” and has pushed for answers. Earlier this month, he wrote to FEMA’s acting administrator, detailing the startling number of applications that “remain without a final decision.”

“Further delay of these approvals,” he wrote, “keeps communities and families in limbo, in some cases paying expenses on homes they cannot live in while they await word from FEMA.”

FEMA did not comment on questions about the program.

The situation is just one element of the sprawling and ongoing recovery, and of the palpable frustration in western North Carolina — especially given promises by President Donald Trump during a visit early this year, where he vowed to “slash through every bureaucratic barrier” and insisted that “every single inch of every property will be fully rebuilt, greater and more beautiful than it was before.”

For homeowners such as Clark, the not knowing has become all-consuming.

“The uncertainty has taken a heavy toll — financially, emotionally, and on my family’s sense of security,” she wrote to Stein in one August letter. “It is heartbreaking to think that, after surviving a disaster, we may lose everything because of timelines and red tape that are beyond our control.”

Months later, she feels much the same.

“There’s so little information,” she said. “Nobody really has any answers. We are just sitting here, waiting.”

‘That hope is dwindling’

Rob Moore, who has long studied flooding risks and disaster policy for the Natural Resources Defense Council, said buyouts under FEMA’s hazard mitigation program have been an important tool for decades.

When it works as intended, voluntary buyouts allow homeowners to receive the predisaster value for their homes so that they can relocate and start over. The program can help communities reduce overall flood risk and better prepare for future calamities, as part of the deal is that properties acquired by the government are turned into open space.

In a 2019 study, Moore and a colleague reviewed nearly 30 years of FEMA data on buyouts — including speaking with former owners of some of the more than 43,000 properties the agency had acquired since the 1980s. Those acquisitions have taken place in 49 states and several U.S. territories, the report said.

In short, they found that the program played a critical role in the wake of disasters, and is likely to become only more vital as rising seas and escalating flood risks displace more Americans.

But one issue has been a constant: Buyouts are complex, and hardly ever happen quickly.

“Under the best of circumstances, these things take more time than they should. But these are clearly not the best of circumstances,” said Moore, referring to deep staffing cuts at FEMA this year and the uncertainty about the agency’s future and its mission.

The 2019 study found that it takes a median of about five years between a flooding disaster and the completion of a FEMA-funded buyout project. FEMA has said almost 80% of acquisitions are approved in less than two years, and 93% are approved in under three years.

“While every buyout project is different, one thing is clear: long wait times make buyouts less accessible, less equitable, and less effective for disaster mitigation and climate adaptation,” the researchers wrote.

Moore thinks something deeper than the normal lag times could be at play in North Carolina, where many county and state officials moved quickly to open up applications for homeowners interested in potential buyouts.

“Typically, communities are so focused on cleaning up and recovering that they don’t even think about other risk reduction activities until a year goes by,” he said.

But in North Carolina after Helene, many localities moved much quicker.

Leaders in Buncombe County, home to Asheville and other municipalities, were among the local officials who tried to speed up the process in hopes of getting help to qualified residents sooner. The county began taking applications for buyouts in January, barely three months after the storm.

“We were hoping that because we started earlier, that we would see buyouts already started and/or reconstruction already started, but we haven’t seen that,” said Avril Pinder, Buncombe’s county manager.

Pinder said local FEMA representatives have worked tirelessly since the storm hit, and that the region would be in much worse shape without their help over the past year. Indeed, hundreds of millions of dollars have poured in from the agency for a range of recovery programs, with much more expected.

The reality is that local governments continue to wait for large sums in federal reimbursements for debris cleanup and other projects. Roads still need repair. Renters and homeowners remain displaced. Certainly for those storm victims still awaiting a buyout, it has been a season of silence and stress.

“What we are hearing is, ‘What do we do now? How do we pay for this, as well as [another] place to live?’” Pinder said. “There is hope, but that hope is dwindling because it’s been a year now that they’ve applied for this, and they’re still carrying a mortgage or rent someplace else. And they’re trying to move ahead with their lives.”

Carey and Steve Hayo, whose home just outside Hendersonville was devoured by a landslide during Helene, are among those struggling to move ahead.

The couple was fortunate to be out of town when a wall of mud and debris came screaming down a mountainside, knocking their home, a guesthouse and a garage clean off their foundations. But the disaster swallowed most of their life’s investment and virtually all their belongings. A pile of rubble is all that remains.

The Hayos no longer had a mortgage, but also have no clear way of recouping their losses, as insurance doesn’t cover landslides. They are living in their third place since Helene. Both in their 70s, they are in counseling for trauma. Many weeks have passed in a blur of phone calls to insurers, bankers and lawyers, local officials, and FEMA.

“It’s like a bad nightmare,” Carey Hayo said of the experience. As signs of recovery unfold around them, they feel stuck. “You get hopeful, and then you don’t hear anything … There’s just no information.”

More than a year has passed since the couple applied for a buyout through the federal hazard mitigation program. But as with everyone else who did the same, that prospect remains uncertain. Recently, the couple spoke at a Henderson County commission meeting, pushing local officials to help secure funding — and answers.

“We’re just frustrated,” Steve Hayo told panel. “This doesn’t seem to have an end. And that’s what we are searching for.”

‘Unfinished business’

For their part, North Carolina officials insist they are doing all they can.

The state has overseen hundreds of millions of dollars in hazard mitigation across multiple disasters beginning with Hurricane Floyd in 1999, and prides itself on ensuring that each hazard mitigation application “meets or exceeds federal guidelines,” said Justin Graney, a spokesperson for N.C. Emergency Management.

“North Carolina is unfortunately no stranger to disasters and has become a national leader in the hazard mitigation space,” Graney said, saying the state “is not a novice” when it comes to implementing such projects as buyouts and elevations. In addition, he said, the state “moved at a rapid pace” after Helene to process applications from affected homeowners.

Graney said officials had worked with FEMA to resolve issues with a small number of buyout applications where portions of the property might be needed for nearby road reconstruction or repair projects, which are subject to review by another agency. But he said the vast majority of applications under review should not be impacted by such issues, and that the state is confident it had addressed concerns “with projects caught in this federal quagmire.”

Don Campbell, chief of staff to North Carolina’s emergency manager, recently told members of a state task force on Helene recovery that overall, officials had been given little guidance from FEMA on why no buyouts had been approved since Helene.

“We understand that many of those applications are sitting on the desk of the secretary of homeland security,” Campbell said, adding that state and local officials are acutely aware of the real-world implications for homeowners struggling to hang on in the meantime.

Matt Calabria, the head of the Governor’s Recovery Office for Western North Carolina, said there is reason for cautious optimism. The state received notice shortly after the first anniversary of Helene that it will be eligible for up to about $1.5 billion in hazard mitigation funding, depending on the size and number of qualified projects.

But those dollars are not guaranteed, and changes in criteria have made it tougher for some projects to qualify, he said. Either way, nothing is likely to happen as quickly as anyone would like.

“The folks who are seeking buyouts, in a lot of cases, have been displaced from their homes. They are in some cases paying mortgages on damaged or destroyed homes,” Calabria said. “And so, these delays are very acutely felt by so many of these families.”

Unlike some other FEMA programs that are reimbursement-based, buyouts require an up-front approval from the agency, Calabria said.

“That’s why we are seeking word from FEMA, so that we can begin proceeding with these projects,” he said. “These delays have been outsized, and we know that for hundreds of families, this is going to make a tremendous difference. So, we continue to push every day.”

In Fairview, Elizabeth Clark is wrestling with what to do when the next mortgage payment comes due.

“At this point, we have decided we are not going to pay a dime on a house we can’t even live in,” at least until she has clarity about whether FEMA is likely to approve a buyout, she said.

Clark worries about losing the home, which sits within sight of her parents’ house, to foreclosure. She worries about wrecking her credit. But, she said, “We had to spend so much money replacing things. We don’t have money to throw away.”

A 45-minute drive to the south, Carey and Steve Hayo are also fighting against cynicism and weariness as they figure out what comes next. On a cold December afternoon, they returned once more to the place that gave them more than a decade of happy memories.

The garden where they once lovingly tended to vegetables. The rooms where they welcomed family and friends. The hillsides blanketed in rhododendrons.

“People would drive up and say, ‘You live in paradise,’” Carey said.

“It was a nice little oasis,” said Steve, looking out over the heap of twisted metal and glass and insulation buried amid a sea of mud and fallen trees.

Whether a federal buyout ultimately comes through has significant financial implications for the couple, of course. But it is clear they are seeking something more than just a check. They crave closure.

“It’s unfinished business,” Carey Hayo said. “It’s like if your mother died and you couldn’t bury her. You can’t complete the mourning.

“That’s what this is: mourning.”

When Marc and Cristina Easton’s son was diagnosed with autism at 20 months, the Baltimore couple left the doctor’s appointment in confusion. Their toddler — who was very social — didn’t resemble the picture of the condition they thought they knew. And the specialists could offer little clarity about why or what lay ahead.

It wasn’t until four years after their child’s diagnosis that the Eastons finally began to get answers that offered them a glimmer of understanding. This summer, a team from Princeton and the Flatiron Institute released a paper showing evidence for four distinct autism phenotypes, each defined by its own constellation of behaviors and genetic traits. The dense, data-heavy paper was published with little fanfare. But to the Eastons, who are among the thousands of families who volunteered their medical information for the study, the findings felt seismic.

“This idea that we’re seeing not one but many stories of autism made a lot of sense to me,” Cristina said.

For decades, autism has been described as a spectrum — an elastic term that stretches from nonverbal children to adults with doctorates. Beneath that vast range lies a shared pattern of social communication and behavioral differences, long resistant to neat explanations.

Now, advances in brain imaging, genetics and computational science are revealing discreet biological subtypes. The discoveries could one day lead to more accurate diagnoses and treatments — raising profound questions about whether autism should be seen as something to cure or as an essential facet of human diversity.

There are a few high-impact mutations that alone appear to lead to autism. But researchers now suspect that the majority of cases arise from a subtler genetic architecture — common variants scattered throughout the population that, in certain combinations and under certain environmental conditions, can alter development.

And while recent public discourse has been clouded by misinformation about the role vaccines play in autism, Tylenol and what factors cause the condition, the new analysis is gradually illuminating the science of autism’s beginnings. It suggests that some children may have genetic mutations when they’re born that activate at different times in life — a reflection of varying paths that emerge at different moments.

Natalie Sauerwald is one of the lead authors of the subtypes study and a computational biologist at the Flatiron Institute, part of the Simons Foundation, which funds scientific research. She compared earlier autism research to assembling a jigsaw puzzle, only to find that the pieces didn’t quite fit — not because the image was unclear but because “the box had always contained several puzzles, shuffled together.”

There isn’t just one autism, Sauerwald said: “There are many autisms.”

Genetic roots

Pinning down who counts as autistic has always been complicated. The condition manifests in an extraordinary range of ways — across genders, abilities, and life experiences — defying any single definition. Boys are far more likely to receive a diagnosis than girls, though many researchers suspect that girls are frequently overlooked because their symptoms may appear less disruptive or more easily masked.

In recent years, as diagnostic criteria have broadened, the number of people identified as having autism has risen sharply. Most of the growth has been in those who have more mild symptoms as opposed to those who are profoundly impacted and have minimal or no language or have an intellectual disability, according to Centers for Disease Control and Prevention data. About 1 in 150 children were diagnosed with autism in 2000 in U.S. communities examined by the Centers for Disease Control and Prevention; by 2022, that figure had climbed to 1 in 31. The increase may look staggering, but many experts say it reflects not an epidemic of autism itself but a greater understanding of its many forms — and a society becoming more attuned to recognizing them.

A computational biologist, Sauerwald’s lifework has been about studying genes and their relationship with human health. She had previously published research on COVID-19 and cancer, but she had read a lot about how the significant variability of autism made it so difficult to treat and reached out to researchers at Princeton.

When Sauerwald began analyzing the autism database managed by the Simons Foundation, a science nonprofit, and housing information on over 5,000 children, she expected the results to be messy. The spectrum spans such a wide range that she assumed the categories would blur together, like overlapping circles in a Venn diagram. Instead, the data resolved into four groups with their own genetic and behavioral signatures.

“That level of distinctiveness was really surprising,” she said.

The work published in July in Nature Genetics detailed the four categories.

Broadly affected

The smallest group — about 10 percent of participants — faced the steepest challenges, marked by developmental delays, difficulties with communication and social interaction, and repetitive behaviors that touched nearly every part of life.

Mixed autism with developmental delay

Roughly 19% showed early developmental delays but few signs of anxiety, depression, or disruptive behavior. Researchers call this group “mixed” because its members vary widely in how strongly they display social or repetitive behaviors.

Moderate challenges

About a third of participants fell into this group, showing the hallmark traits of autism — social and communication differences and repetitive habits — but in subtler ways and without developmental delays.

Social and/or behavioral

The largest group, around 37%, met early developmental milestones on time yet often grappled with other conditions later on, including ADHD, anxiety, depression, or obsessive-compulsive disorder.

One of Sauerwald’s co-authors, Olga Troyanskaya, director of Princeton Precision Health, said she was stunned that in the social and/or behavioral group, individuals tended to be diagnosed later — 6 to 8 years of age — whereas most children exhibit noticeable symptoms before the age of 3 and are diagnosed at that time.

The new analysis study showed the delay may stem from genetic mutations that are present when a child is born — but activate later in life.

“To me, this was the most fascinating part,” Troyanskaya said. “We’ve always thought of autism as a disorder of fetal development — but that may be true only for some children.”

That breakthrough idea was given another boost in October when a second study — published in Nature by an entirely different team using separate data — arrived at essentially the same conclusion: Genetically distinct forms of autism may unfold on different life timelines. The new analysis, based on data from the United States, Europe, and Australia, suggested that children diagnosed after age 6 carried distinct genetic profiles and that their form of autism looked strikingly different from the early-childhood type — less like a developmental delay and more akin to conditions such as depression, ADHD, or post-traumatic stress disorder.

“These findings provide further support for the hypothesis that the umbrella term ‘autism’ describes multiple phenomena with differing [causes], developmental trajectories, and correlations with mental-health conditions,” the authors wrote.

Tracing outside forces

Understanding that autism may encompass multiple distinct conditions naturally leads to another question: What, exactly, drives these differences at the biological level?

In totality, hundreds of genetic mutations have been identified as being linked to autism.

Roughly half appear to be inherited — but the rest arise spontaneously, and it is these that are perhaps the most mysterious. These mutations come from random copying errors in DNA or from outside influences. The list of suspects impacting autism is long: air pollution, paternal age, maternal diabetes, prenatal infections — all supported by some evidence, though none yet definitive.

Sauerwald and Troyanskaya’s work illuminates the genetic blueprint of autism. But genes don’t act in isolation. Across laboratories, scientists are probing external forces, particularly the prenatal environment, to find out what might nudge those genes to switch on or off.

That curiosity has, at times, collided with politics. In recent months, scientists have been baffled by the Trump administration’s decision to single out Tylenol use in pregnancy as a possible cause. “There are other exposures with similarly not very strong statistical associations,” said Catherine Lord, a professor of psychiatry at UCLA and one of the field’s foremost experts, referring to work on SSRI antidepressants, fever, heavy metals, and other possible prenatal and environmental associations. “Across these studies, the effect sizes are small.”

Zeyan Liew, an environmental epidemiologist at Yale, has spent years studying PFAS, also knows as “forever chemicals,” the synthetic compounds used in products like Teflon that now pervade food and drinking water. His National Institutes of Health-funded research, drawing on data from millions of children across three European countries, found no direct link between maternal PFAS levels and autism diagnoses. But the data hinted at something subtler: Children whose mothers had higher exposure tended to show more social and behavioral difficulties — hyperactivity, anxiety, trouble forming friendships.

“It shows that a mother’s PFAS level is correlated with a child’s social developmental functioning,” Liew said. The chemicals, he suspects, may act on the developing brain, disrupt hormonal balance or trigger oxidative stress — “unwanted biological interference,” he said, “during a period of rapid brain development.”

David Mandell, a professor of psychiatry at the University of Pennsylvania and part of a newly funded NIH team, is developing a predictive model to examine a wider range of exposures: medications, air quality, access to green space, the built environment. The goal, he said, is to understand not just which factors matter, but when. Timing may prove decisive. He pointed to the infamous case of thalidomide, a morning-sickness drug withdrawn in the 1960s after causing birth defects. Autism risk rose only among women who took it between the 20th and 24th day after conception.

“We need to look in detail at what specific part of pregnancy,” Mandell said.

A brain wired differently

If multiple types of autism arise from the interplay of genetics and environment, then the brain is the place where those varied influences converge and become visible.

One promising but still early line of research centers on biochemical pathways in the brain: In some children, autoantibodies appear to block folate transport into the brain, and early trials of leucovorin, a form of vitamin B, suggest it may restore function in some cases. The findings are preliminary, but this is the medication the Trump administration fast-tracked for approval in September.

While that work points to chemistry at the molecular level, another line of inquiry looks at the brain’s architecture itself. Two decades ago, scientists noticed that some young children with autism had brains that grew unusually fast in infancy. The overgrowth, often linked to more severe symptoms, seemed to reach across regions responsible for both higher reasoning and basic sensory perception — the midbrain, hippocampus, parahippocampal gyrus, superior temporal gyrus and beyond.

The newest insights into autism have less to do with differences in brain regions but rather the connections that link them.

For decades, Yale researcher James McPartland has been peering into people’s brains, searching for clues about autism. His work has involved painstakingly cataloguing scans and measuring subtle changes over time. Then, a few years ago, a pattern emerged.

Adults with autism, McPartland noticed, seemed to have fewer synapses — the tiny junctions where nerve cells exchange information — than their neurotypical peers. And within the autism group, those with the sparsest connections often struggled most with the social demands of daily life. The findings were presented this year at the American Neuropsychiatric Association’s annual conference.

“We saw a very strong correlation between synaptic density and the kinds of challenges people faced,” McPartland, director of the Center for Brain and Mind Health at the Yale School of Medicine, said. “We were very excited.”

Ellis

The Eastons’ autism journey began in 2021.

Both Marc (who works in quality assurance in New York City) and Cristina (at the time a teacher) were still working from home following the pandemic closures, and they noticed little things that seemed off about their son Ellis.

Marc, now 55, observed that Ellis no longer repeated words the way he once did, and Cristina, now 42, found herself puzzled by the way he played. When she set out bowls of quinoa and lentils, hoping he’d scoop or pour, he would only sprinkle.

Ellis’s parents didn’t think much of the referral for a developmental evaluation — until it came back as autism. A diagnosis relies on behavioral checklists, not scans or lab tests, and on criteria many clinicians see as vague.

Now 6 years old, Ellis is a nonspeaking kindergartner who communicates through music. When he’s been upset and is calm again, he sings a melody from a Batwheels clip. When he wants fruit, there’s a fruit salad song he hums and a weather song when he wants to go outside. He’s also a Taylor Swift fan, and each of her songs is associated with an emotion or want.

The diagnostic shorthand — calling someone profoundly affected, or assigning a “Level 1, 2 or 3” label based on support needs — feels too blunt to them. Cristina worries that the familiar linear framing of autism, from mild to severe, often becomes “a way to write people off.” The couple has seen how hard it is to categorize people who defy simple descriptions such as an adult who is academically gifted but struggles to tie their shoes.

Participants in Sauerwald’s research study haven’t been given individual results, but the Eastons say they have been debating what category Ellis falls into, hoping it will illuminate the roots of his diagnosis and hint at the trajectory ahead.

“When you have a child like ours, your natural inclination is to reverse time and look at your childhood and entire family tree and every experience,” to try to figure out what might have led to the diagnosis, Cristina said.

Cristina believes Ellis belongs to the “broadly affected” category — his delayed milestones and trouble communicating fit that profile. Marc, though, sees him in the mixed group, where symptoms are milder and more variable, because he is able to communicate his needs outside of speech. Still, both parents agree that the study’s new framework captures a complexity long missing from the way autism is typically described.

“It’s dangerous to put people into boxes based on what they appear to do,” Cristina said. “That’s why this new study feels so promising — it sees people with the complexity as they actually are.”