RFK Jr. said his agency will find the cause of autism. These researchers have actually been looking
The annual meeting of the International Society for Autism Research took place in Seattle this week.
The field's premiere scientific conference was scheduled to be held in the Emerald City five years ago, until COVID-19 dashed those plans. This time, U.S. autism researchers face a very different kind of crisis: massive cuts to federal funding, Cabinet members making false statements about the complex neurological condition they study, and a series of confusing and potentially worrisome policy announcements about autism research.
In April, the U.S. Department of Health and Human Services disclosed that it's planning a $50-million 'comprehensive research effort aimed at understanding the causes of [autism spectrum disorder] and improving treatments,' a department spokesperson said. The effort was spurred by Secretary Robert F. Kennedy Jr.'s stated goal of determining the cause of autism, a neurological and developmental condition whose symptoms cluster around challenges with communication, social interaction and sensory processing.
At his first news conference last month, Kennedy made a number of scientifically inaccurate statements about autism: that it is preventable (there is no evidence that it is); that studying its genetic underpinnings is a 'dead end' (genes play a significant role); that children with autism 'will never hold a job' (autism presents in myriad different ways and many autistic people work) and, perhaps most significantly, that 'we know it's an environmental exposure' (this is, to put it mildly, far from an established fact.)
On Thursday, an HHS spokesperson said that the agency was developing 'a secure data repository' of 'large-scale, de-identified data to better understand the causes of conditions like autism and chronic diseases,' similar to the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) Program.
This was a clarification of National Institutes of Health Director Dr. Jay Bhattacharya's statement during an April 21 meeting with NIH advisors that the study would draw in part from personal health information gathered across a variety of sources, including insurance claims, pharmacy chain medication records and fitness tracker data, a plan widely reported as an 'autism registry.'
HHS has otherwise offered minimal detail on the research effort, which Kennedy initially said would return results as early as September. (Bhattacharya has since pushed back on that timeline, saying that grants would only start to go out to participating researchers by the end of summer.)
A half-dozen senior scientists interviewed for this article said that neither they nor anyone they knew of had been consulted.
'I'm someone who knows a lot of people in this field,' said Helen Tager-Flusberg, professor emerita at Boston University and director of its Center for Autism Research Excellence, and 'not a single person I know has been approached.'
Tager-Flusberg is a member of HHS' Interagency Autism Coordinating Committee, which advises the agency and Congress on autism research. Since Trump took office in January, she said, the committee has not received any communications from HHS, and has not been informed or consulted about the latest research initiative.
'With one hand, [Kennedy's] offering $50 million in new research, and with the other hand, they have already removed a significantly large number of grants that are already carrying out cutting-edge research on autism,' she said. 'NIH has invested hundreds of millions of dollars into [studying] causes of autism over the last three decades, and so it's disturbing to hear that it's all being dismissed.'
The U.S. government is by far the nation's biggest investor in autism research. In 2019 and 2020, the most recent period for which data are available, federal grants totaling $350 million supported 82.5% of U.S. autism research, with the remainder coming from private sources.
'Federal funding is the engine by which research runs, and it is certainly the engine by which autism research has made the incredible advances that it has over the last 25 years,' said Matthew Lerner, an associate professor at Drexel University's AJ Drexel Autism Institute and a board member of the International Society for Autism Research.
Several researchers also said that they found Kennedy's insistence that autism stems from exposure to an undetermined environmental source perplexing. The role of environmental factors in autism is already a major focus area for government-funded research, they said, albeit in a more nuanced way.
When scientists speak of 'environmental exposures,' they are referring to any nongenetic influence before or after birth. These can range from prenatal stress hormones to neighborhood pollutants to the school a child attends.
'Any scientist will tell you that this is such a complex thing that you can't just be looking at one [cause], that you have to be thinking about the role of environment, the role of genetics, how they interact, and how that changes over the lifespan,' said Alycia Halladay, chief science officer of the nonprofit Autism Science Foundation. 'We do know that there are a lot of environmental exposures that have not been studied. We can't say it is an environmental toxin.'
Dr. Shafali Jeste was more blunt.
'This is what we dedicate our lives to,' the Los Angeles pediatric neurologist said. 'If we knew there could be one environmental cause, wouldn't we all be out there hunting for it, and maybe having already found it, given that we've been doing research for 20 years?'
The cuts and chaos of the second Trump administration are already having an affect on the research community.
Several people interviewed for this article asked not to be quoted by name for fear of retaliation, or specified that they could only speak on behalf of themselves and not their employer, at the institution's request.
In late April, Tager-Flusberg founded the Coalition of Autism Scientists, a group of senior researchers united around the shared goals of pushing back on disinformation and advocating for evidence-based research approaches.
More than 200 fellow scientists signed up immediately, she said. But when younger researchers have asked to join, she has discouraged them from doing so. Speaking out could cost them their jobs.
'I don't really have anything to lose,' she said. But 'the last thing I would want is to put anyone's career in jeopardy.'
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Yahoo
6 hours ago
- Yahoo
Mobile clinics aim to boost rural health care measles vaccinations amid outbreak
The "Wellness on Wheels" program launched in spring of 2024. (Courtesy of South Dakota Department of Health) The South Dakota Department of Health plans to send its fledgling mobile clinics to underserved and undervaccinated areas of the state in response to the nationwide measles outbreak making its way to the state. Last year, South Dakota reported its first measles case in nine years. The state Department of Health recently reported the state's first case this year in Meade County in western South Dakota. Last week, on Friday, a second case was reported in Rapid City. People who visited Sam's Club in that city on June 1, or Dakota Premier Medical Center the following day were urged by the department to monitor themselves for symptoms for 21 days. Measles is a highly contagious viral disease that spreads through the air. Those who lack immunity from vaccination or past infection are highly likely to catch it from an infected person. As surrounding states report more cases, Health Department Secretary Melissa Magstadt said the state's 'Wellness on Wheels' clinics can help encourage vaccinations. 'I question it myself': South Dakota vaccination rates fall amid mistrust and misinformation The fleet boasts five vehicles equipped to provide immunizations, test for sexually transmitted diseases such as syphilis, as well as provide screenings, prenatal care and other support. The effort fills in gaps to public health care access across the state, especially in rural and tribal communities, Magstadt said. 'It's about how we can actively use these tools to reach underserved populations,' Magstadt said. 'It's not something I would have thought about looking to leverage for something like measles vaccinations before.' The department hasn't decided where to send their fleet. Counties with the fewest kindergarteners vaccinated per capita for measles, mumps and rubella include Faulk, Jones and Hutchinson, state data shows. South Dakota counties that share tribal land and rural counties in south-central areas of the state rank the worst for clinical care use and access in the state, according to the University of Wisconsin Population Health Institute's 2023 report. Federal COVID relief funds paid for Wellness on Wheels. 'Because of the pandemic, public health infrastructure was found to be wanting,' Magstadt said. That infrastructure missed 'critical pieces' that hadn't been invested in, she said, such as health care access in rural areas. More than a hundred rural hospitals in the U.S. have closed in the last decade. The program, launched in April of last year, cost about $800,000 in federal funding. The state's public health COVID funding was also used to support a community health worker program, update emergency medical service equipment and telemedicine access, analyze the state of emergency medical services in South Dakota, and build a Public Health Lab and department training center. Magstadt said staff working with the Women, Infants and Children (WIC) program requested the mobile units. WIC is a federal-state program that provides healthy food, nutrition education and health care referrals to low-income women and their young children. So far, Wellness on Wheels staff have mainly driven to events. Magstadt said the department has focused on increasing awareness of the program and building trust in communities and among tribal leaders. She plans to have staff drive the buses to rural communities more regularly to increase exposure and encourage use. 'Being consistently at a facility or place every other week will help people find it,' Magstadt said. 'We talk about the importance of STI testing, for example, but if you don't know where to get tested then that's another barrier.' Magstadt plans to have the department park one of the vehicles at a homeless shelter in Rapid City this summer as well to encourage underserved urban communities to seek services. 'We like people to be connected to primary care services, but there are unique situations where it's harder to get to health care facilities,' Magstadt said. She compared the mobile clinics as a return to home visits by doctors. That practice largely ceased in the 1960s due to cost efficiencies. 'It's a part of this menu of health care access and options no longer requiring people to come to a clinic or health care system,' Magstadt said, 'but health care being taken to patients and families who need it.' Mobile health care clinics are available in every state. They range from public entities like South Dakota's Wellness on Wheels, to specialized, private care. Other mobile clinics operating in South Dakota, according to Mobile Health Map, include: Delta Dental Mobile Program Horizon Health on Wheels Midwest Street Medicine Mobile Women's Health Unit VA Mobile Counseling Program
Forbes
7 hours ago
- Forbes
RFK Jr. Will Shrink The Substance Abuse And Mental Health Services Administration. Here's What That Means For Public Health
WASHINGTON, DC - FEBRUARY 13: Robert F. Kennedy Jr. speaks after being sworn in as Secretary of ... More Health and Human Services in the Oval Office at the White House on February 13, 2025 in Washington, DC. (Photo by) Under Secretary of Health and Human Services Robert F. Kennedy Jr., the Substance Abuse and Mental Health Services Administration will be consolidated with other organizations into a new Administration for a Healthy America, or AHA. The SAMHSA has already lost a third of its staff of 900 employees from the dramatic downsizing of the HHS. In addition, President Trump's budget bill will cut $1 billion from the agency's budget. The SAMHSA was created in 1992 by bipartisan legislation in Congress and signed by then President George H.W. Bush. With an $8 billion budget, it provides crucial mental health and addiction services across all of America, largely through federal grants administered by individual states. Key initiatives of the agency include grants supporting community-based treatments, the 988 crisis helpline, naloxone distribution programs and the administration of methadone clinics. Although the future of mental health care remains uncertain under the new AHA, dissolving the SAMHSA will have major effects on public health. Here's how. For starters, massive layoffs and restructuring breeds chaos, disruption and workforce turmoil. As in other agencies where highly qualified seasoned professionals have been asked to resign or retire across the HHS, so too could expert mental health professionals who are essential in combating addiction and mental health conditions like depression and anxiety. With less qualified experts to treat mental health conditions, more Americans could suffer from drug overdoses and mental conditions like schizophrenia. The restructuring and consolidation of mental health services into the new AHA could undermine addiction treatment and evidence-based medicine. As an example, SAMHSA regulates methadone clinics and promotes evidence-based treatments like Buprenorphine and Naloxone to treat opioid addiction. RFK Jr., on the other hand, is known to tout unconventional treatments that have no basis in science. He has proposed implementing the use of camps and farms where people experiencing addiction would be sent to recover. These types of interventions have no basis in science and may reverse decades of progress in addiction treatment. There has already been a nearly 27% decrease in drug overdoses in America comparing 2024 to 2023, according to the CDC. If RFK Jr. were to implement such initiatives into the AHA, this would erode scientific integrity for the advancement of addiction and mental health treatments. A shift from evidence-based to 'wellness-centric' models of treatment could leave many Americans without access to high-quality proven scientific treatments. Dismantling the SAMSHA will also affect vulnerable populations, particularly the 60 million Americans that live in rural parts of the country. Rural communities rely on SAMSHA grant funding for addiction treatment and mental health services, according to NPR. With massive funding cuts on the order of $1 billion, Americans living in these areas will have less resources and funds to fight off addiction and mental health conditions. Consolidating an organization that specializes in mental health care into a broader agency will weaken the mental health infrastructure in America. In its announcement document, the HHS states, 'Transferring SAMHSA to AHA will increase operational efficiency and assure programs are carried out because it will break down artificial divisions between similar programs.' But how similar exactly are the programs? The SAMHSA, which focuses on addiction and mental health conditions, is drastically different than the National Institute for Occupational Safety and Health which focuses on health hazards related to the workplace. Despite having two very different focuses, both agencies will be consolidated under RFK Jr.'s AHA. The shrinking of the SAMHSA marks a notable shift in national policy. Although proponents of the move may site reduced bureaucratic overlap and streamlined coordination of health efforts in support of the AHA, the move represents a fundamental change in how America will approach addiction and mental health. Scientists, public health officials and the American people will be watching closely whether evidence-based treatments are promoted and if further progress will be made with respect to decreasing drug overdoses.
Yahoo
9 hours ago
- Yahoo
A New COVID Variant Is Here, And It's More Transmissible — Here Are The Signs And Symptoms
A new COVID variant known as NB.1.8.1 has made landfall in the United States. The variant, which was first detected in China this past January, currently accounts for 10% of the SARS-CoV-2 sequences tested from around the world, recent surveillance data found. That's a significant jump from 2.5% four weeks ago. A Centers for Disease Control and Prevention (CDC) spokesperson told HuffPost that the agency is in regular contact with international partners about the activity of NB.1.8.1. To date, only 20 NB.1.8.1 sequences have been identified in the U.S. — that's below the threshold needed for a variant to appear on the agency's COVID dashboard. (As soon as its prevalence increases, NB.1.8.1 will pop up on the tracker, the spokesperson added.) It's nerve-wracking to hear that a new variant is making the rounds, but infectious disease specialists say there are no glaring differences between the symptoms of NB.1.8.1 and those caused by other versions of SARS-CoV-2. 'Currently it appears that NB.1.8.1 would have similar symptoms to other COVID variants that have recently been circulating,' Dr. Zachary Hoy, a pediatric infectious disease specialist with Pediatrix Medical Group in Nashville, Tennessee, told HuffPost. Here's what to know about the newest COVID variant that's gaining traction around the world. Compared to the currently dominant variant in the U.S. (LP.8.1), NB.1.8.1 has a handful of new mutations on the spike protein that may enhance its ability to bind to our cells, according to the World Health Organization (WHO). The agency suspects these mutations will increase the virus's transmissibility and, potentially, diminish the effectiveness of neutralizing antibodies that prevent pathogens from latching to our cells. In other words, the variant may be skilled at dodging some of our immune defenses, research suggests. According to Dr. Amesh Adalja, an infectious diseases expert and senior scholar at the Johns Hopkins University Center for Health Security, NB.1.8.1's symptoms are pretty much the same as those seen with other SARS-CoV-2 variants. Two of COVID's hallmark symptoms are a mild but persistent dry cough and nasal congestion, Hoy said. Many people who come down with COVID are also hit with fatigue and tiredness. 'An infected person can still make it through the day, but they are resting more and feel more tired throughout the day,' Hoy said. Other common symptoms include a fever, chills, a sore throat and muscle aches. 'Some have described recent variants as less intense symptoms as compared to wintertime influenza viruses, but both can have severe symptoms,' Hoy said. There's no evidence suggesting the variant causes more severe disease or an uptick in hospitalizations or deaths, the WHO states. The only noticeable aspect, as of now, is that it's rising in prevalence, Adalja said. It's too early to know exactly how effective the shots are — as the research on NB.1.8.1 is limited since it's so new — but scientists expect the shots to hold up well. NB.1.8.1 broke off from the Omicron JN.1 lineage, which the 2024-2025 vaccines target. 'The ability of the vaccines to prevent severe illness is intact though protection versus infection is limited and transient,' Adalja said. Anyone who is at risk of severe disease should stay up-to-date with the shots. 'Those in older populations or with underlying immune disorders or on immune-decreasing medications would benefit more from vaccination or those with increased exposure such as healthcare workers,' Hoy added. So if you have a condition that puts you at risk, it's worth getting vaccinated if it's been more than six months since your last vaccine or bout of COVID, Adalja advises. He also added that those who are low-risk likely do not need to go out and get another shot. Most people will be able to recover at home by resting and staying hydrated. While you're sick, acetaminophen and ibuprofen can help alleviate muscle aches and fevers, Hoy said. And, in most cases, symptoms should clear up within a week. For those who are at risk for severe disease, including older adults and people who are immune-compromised, it's worth contacting a physician as they can prescribe antivirals — Paxlovid and Molnupiravir — that can significantly lower the risk of severe complications and death. As was the case with previous variants, these antivirals work best when started within five days of symptom onset. As for when you should go to an urgent care or emergency room? When you have chest pain, have a hard time waking up or staying awake, or feel confused and disoriented, the CDC advises. Hoy says the most concerning symptom he warns patients about is difficulty breathing. 'If you have COVID or COVID-like illness and have worsening trouble breathing or chest pain, you should be evaluated at your doctor's office, urgent care or the ER,' he said. RFK Jr. Says COVID Shot Will No Longer Be Advised For Healthy Kids, Pregnant Women Trump's FDA Has Axed COVID Boosters For Most People — And Medical Experts Are Deeply Worried New Trump Vaccine Policy Limits Access To COVID Shots
