The moment that jolted Sommer Nyte from being mostly apolitical to posting publicly on Facebook about President Donald Trump’s administration was when she heard the nation’s top health official proclaim that “autism destroys families.”
The 47-year-old Bellingham real estate broker was heartbroken and in disbelief. She’s an autistic mother of four, some of whom are on the spectrum and need varying kinds of support. As far as she’s concerned, her family is doing just fine.
“Let me be clear … autism is a spectrum,” Nyte said into the camera. “I’m autistic, I run a business. I own property without mortgages, I pay taxes, I’ve dated, I’ve written poetry. And if you know me, you know I can build a bathroom let alone use one,” she said. Her typical Facebook posts — videos of herself talking about real estate trends — usually rack up two or three shares and a handful of likes. This one spurred kudos from nearly 90 people, plus dozens of encouraging comments.
In the days since Health and Human Services Secretary Robert F. Kennedy Jr. pledged to determine the cause of autism within months and portrayed autistic people as incapable of several basic life skills, Nyte has joined a chorus of autistic Washingtonians, their families, clinicians and autism researchers who are angry and afraid for their futures.
“It really makes me, and I know a lot of other people like me, feel like we’re being told that we shouldn’t exist,” she said.
Kennedy has made a dizzying number of polarizing and scientifically inaccurate comments in recent weeks. He called autism preventable and an “epidemic,” and linked rising diagnostic rates to environmental causes like mold and food additives.
The HHS secretary’s latest focus on autism has cast into the national spotlight contentious and complex debates about the nature of the neurodevelopmental condition, the direction of research and the value of autistic voices in helping determine the answers to these questions.
His comments also come as thousands of the world’s foremost autism experts descend on Seattle this week to attend the annual meeting of the International Society for Autism Research. The conference has drawn an increasing number of autistic advocates and parents vying for a seat at the table among the scientists dedicated to advancing society’s understanding of autism.
“Obviously we plan this all out before this kind of moment,” said Sara Jane Webb, who is helping to host the conference and is a professor in the Psychiatry and Behavioral Sciences Department at the University of Washington School of Medicine. “I imagine there’ll be a lot of conversation about this.”
Many of the people interviewed for this story expressed dueling emotions in the days leading up to the conference: relief that federal officials are paying attention to autism and fear that attention is being warped by politics and pseudoscience.
This moment is also fueling a new spirit of goodwill and partnership among autism communities that often disagree. In April, a coalition of 17 autism organizations, plus three dozen disability rights, advocacy and philanthropic groups, put out a joint statement condemning rhetoric used by Kennedy and decrying federal health care and education cuts that “threaten the very services that Autistic individuals and their families rely on.”
“I really wasn’t sure if I would ever live to see the day,” said 21-year-old Ali Burris, who is autistic and is president of the Autism Society of Washington. “This is one positive thing. That we’re able to find something that we’re able to get in the same room and talk to each other about.”
“Chilling effect“
Annette Estes remembers the first big federal investments in autism research: In the mid-1990s, the National Institutes of Health began injecting millions of dollars into the field.
Science has since contributed to monumental shifts in the biological, medical and social understandings of the condition. Seattle, which is home to the UW Autism Center and Seattle Children’s Autism Center, has long been a hub for autism research and patient care.
Kennedy’s stance threatens that progress, Estes and others say.
“It’s having a chilling effect immediately,” said Estes, a child clinical psychologist who runs the UW Autism Center. She’s starting to hear about “families being concerned in ways they’ve never been concerned before about signing up for research and about the privacy of their medical data.”
When Estes got her start in the ’90s, autism was still a relatively new diagnosis — it wasn’t included in clinicians’ diagnostic manual until 1980. As an early-career researcher, Estes was amazed to see how researchers from wildly different disciplines — genetics, neuroscience, developmental psychology — were taking advantage of emerging brain imaging and genetic technologies to begin explaining autism’s traits and piece together its causes.
Autism is defined by two hallmark features: social communication difficulties and patterns of repetitive or restrictive behavior, a broad category that includes everything from fixating on an interest to making repetitive movements like spinning or rocking as a way to self-soothe.
Some people experience relatively mild traits and others experience more disabling effects, like trouble communicating and processing information.
Federal research dollars have been a lifeline for researchers who’ve advanced the understanding of autism beyond this most basic definition; last year, NIH spent an estimated $305 million on autism-related studies. We now have a clearer picture, for instance, of how often it overlaps with other mental and physical health conditions, what early signs look like, and its heritability.
These days, Estes said, some of the most exciting research frontiers involve the priorities of autistic people and their families. For instance, her decision to study sleep was influenced by what she’d heard from families and autistic people about how common sleep disturbances are.
Meanwhile, the federal government is making an unprecedented retreat. The NIH has canceled hundreds of research grants. Federal research agencies have laid off government scientists. And HHS’ focus has shifted to theories like those connecting autism and vaccines, an idea researchers have thoroughly debunked in rigorous studies spanning several decades. The result, some worry, will deepen people’s distrust in science.
“The work that has been done over the last 30 years is eroding,” said Webb. “That is going to again make it harder for autistic individuals and families of autistic individuals to get the care they need, because the community around them is not going to know who to trust or what to believe.”
“Out of touch“
Katrina Davis has cried twice over the past few weeks.
Tears flowed in recent days when she read an opinion piece by a mother whose life mirrors her own. As a caregiver for a son diagnosed with profound autism, Davis felt deeply connected to the writer, who wrote about feeling her child’s round-the-clock needs weren’t represented by the neurodiversity movement — which focuses on inclusion and acceptance that people’s brains differ, but has been criticized by some as downplaying how hard some families and autistic people struggle.
Davis’ second cry came when she heard Kennedy’s statements about autistic people like her son.
“RFK seemed so gloriously out of touch with what autism is,” she said. “I found it refreshing that he talked about the profound population, because that’s where my son’s at. But I cried because I don’t think it was for the right reasons.”
Davis was particularly upset by Kennedy’s comments about curing autism — something she never hoped for her 25-year-old son Arthur Conroy, who was diagnosed with the condition when he was 2. Over the past few decades, prominent autism advocacy groups have shifted away from supporting the idea of a cure. But some families and organizations push for research focused on curing autism, with desperation driving some families to unproven and potentially harmful therapies.
Conroy, who loves to sing and is interested in dates and calendars, has communication challenges, a history of aggression and can’t live independently. But he works “harder than anybody I know to be in this world. And I’m proud of him for that,” said Davis, who is Conroy’s legal guardian and works as a crisis case manager at a Seattle hospital.
What people like her son need, she said, is “all the energy going into what’s going to help him reach his potential, what’s going to keep him safe, what’s going to give him opportunity and dignity. Not to cure him.”
In general, families can wait months or years to get their children evaluated for autism. More than half of U.S. counties lack a therapist certified to provide Applied Behavior Analysis, a behavioral treatment for autism. And many people and their families struggle to get legally required supports from schools and community agencies meant to serve them. Those with severe traits, who need a wide range of physical, speech, occupational and medical therapies, face even greater hurdles.
About 1 in 31 children are diagnosed with autism, the latest Centers for Disease Control and Prevention data shows, an increase from prior years that CDC officials attribute, at least in part, to earlier screening.
About a quarter of autistic people fall on the severe end of the spectrum. Experts warn that while awareness of autism is improving, Washington state’s systems of care for people with intense needs are declining.
“I am not seeing a simultaneous increase in the amount of services, appropriate services to meet the needs of these individuals, and in some cases, (there is) far less,” said Dawn Sidell, executive director of the Northwest Autism Center in Spokane. “It’s horrifying.”
Federal moves to whittle down the Department of Education and make cuts to Medicaid — the public insurance program that nearly 600,000 autistic Americans rely on — could supercharge these service gaps, Davis and others fear.
“Scariest time“
In recent days, HHS has scrapped one of its more controversial proposals: an autism registry drawing on individuals’ private health data that sparked swift and widespread privacy concerns.
But federal backtracking has done little to quell autistic Washingtonians’ fears. Is it suddenly dangerous, many wonder, to be open about being autistic?
“To be recognized is an amazing thing,” said Burris, who was diagnosed with autism just before her 20th birthday. “When it’s being paired with rhetoric of autism as debilitating, as life-destroying, I think people are less comfortable being associated with a lot of those words and … are more likely to be afraid of the stigma of that diagnosis.”
At the research conference in Seattle on Thursday, 34-year-old Zack Siddeek proudly wore a shirt reading “Vaccines don’t cause autism. I do.”
When Siddeek was growing up, he was encouraged to hide his autistic traits. “That’s what’s best,” he remembers being told by his parents, teachers and other adults in his life. “I believed that. And that’s what I did.”
After college, he went through a dark period that ultimately led to his decision to be more open about his diagnosis. He became a social worker, advocate and community organizer who now helps facilitate 25 autism support groups across Washington.
Many people can’t hide their autistic traits, he said, as he was instructed to do many years ago. Those people, as well autistic folks who are transgender, are the ones he’s most terrified for.
“My autism has always given me a purpose in life,” he said. “It’s also the scariest time in my life to be autistic.”