Ascension Wisconsin facilities are no longer in-network for those on UnitedHealthcare health insurance plans after the two companies failed to reach an agreement over reimbursement rates.

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Ashley Mathy and Cindy Bentley, who both identify as having autism, record a video for the Self Determination channel on YouTube, a project of the Wisconsin Board for People with Developmental Disabilities (BPDD). States Newsroom spoke with three medical experts about the state of research as well as the complexity involved in understanding autism spectrum disorder. (Photo courtesy of the Wisconsin BPDD)

WASHINGTON — Health and Human Services Secretary Robert F. Kennedy Jr. stirred up major concerns and considerable speculation earlier this year when he announced the administration would release a report revealing the causes of autism by the end of September. 

Kennedy, an environmental lawyer with no medical degree, stood next to President Donald Trump on Sept. 22 as they presented the over-the-counter drug Tylenol as one potential driving factor behind autism diagnoses and pointed to folate, a B vitamin, as a possible treatment — both conclusions the medical community hasn’t yet reached. 

Kennedy throughout his tenure has also made overly broad and disparaging statements about people who have an autism diagnosis, often referring to traits exhibited in people with the most severe cases. For example, he claimed in April that children with autism would never function as independent adults, drawing intense criticism for making a generalization that would not apply to every person with a diagnosis.

The Trump-Kennedy announcement and Kennedy’s characterizations have raised questions about why someone would be diagnosed, what types of research have been done and what reputable science has found about causes. 

States Newsroom spoke with three experts before the announcement to gain a better understanding of autism spectrum disorder. Below are brief excerpts from those interviews. 

What is autism spectrum disorder? 

The two core characteristics of autism are challenges with social communication and the presence of restrictive and repetitive behavior, according to Autism Science Foundation Chief Science Officer Dr. Alycia Halladay. 

As understanding of the diagnosis has evolved, she explained, researchers and families have increasingly referred to it as autisms, plural, instead of autism, singular, in part, because there are so many different subtypes.

“It makes it more accurate when describing it — that autism is not just one entity of core autism features, that there is so much diversity across the spectrum, that it’s actually a group of developmental disorders,” Halladay said. 

The spectrum, she said, ranges from people who may speak rarely to those who are fluent in language, people with cognitive disabilities to those with IQs of more than 120 and people who can live independently to those who need round-the-clock care.

Dr. Michael Murray, a professor in the Department of Psychiatry and Behavioral Health at the Penn State College of Medicine, described it as “a neurodevelopmental disorder, meaning that people are born with it and it’s lifelong and it can cause a variety of challenges for people.”

“The most common and significant and probably pervasive symptom across the spectrum is challenges in understanding and interpreting what we call neurotypical — meaning everyone who is non-autistic — social behavior,” Murray said. “So just understanding all the non-verbal parts of social communication, understanding nuance and non-literal use of language. All those things can be really difficult for autistic people.”

Approximately 1 in 31 children in the United States and 1 in 45 adults fall somewhere along the autism spectrum,  according to data from the Centers for Disease Control and Prevention and a paper published in the Journal of Autism and Developmental Disorders. 

How is autism diagnosed?

Only an expert can diagnose an autism spectrum disorder using criteria in a guide used by health care professionals called the Diagnostic and Statistical Manual of Mental Disorders, or DSM. 

“You need someone who knows autism, who knows what to look for, who knows how to elicit behaviors or not elicit behaviors that are indicative of an autism diagnosis,” Halladay said. “So it’s really diagnosed by a psychiatrist, a psychologist, or somebody else who’s trained to understand what autism is and what it’s not.”

Murray said there are three social communication behaviors that doctors or other qualified medical professionals look for when considering whether to diagnose someone with autism. 

“It is difficulty in interpreting social information. It is difficulty giving social information through things like facial expression and tone of voice. And thirdly, is a difficulty maintaining appropriate peer relationships,” Murray said. “Now, once again, this is from a neurotypical description of peer relationships. There’s a lot of talk among neurodivergent individuals about whether that’s fair, that we rate social relationships based on how we think they should be. But nonetheless, that’s the criteria.”

Murray explained experts also observe the presence of restrictive and repetitive behaviors in assessing whether someone has autism. 

“And that captures things that are in the realm of interacting with the physical world around you,” Murray said. “So that need for sameness and inflexibility maintaining routines.”

Carissa Cascio, a senior scientist at the University of Kansas Life Span Institute and Kansas Center for Autism Research and Training, reinforced that autism is “strictly diagnosed based on behavior.”

“There are genes that have an association with autism that you can test for. There’s some genes that have a very strong association, and you can do a test for the presence of one of those genes,” Cascio said. “But for the diagnosis of autism itself, it’s strictly based on behavior.”

What do we know about the causes of autism?

While more scientific research is needed, a combination of genetics and environmental factors is responsible for the formation of autism spectrum disorders. 

“We know that one of the largest causes of autism is genetics. We know this because it runs in families,” Halladay said, adding there “are over 150 known genes associated with autism.”

“If there’s a variation in the gene, there’s a high likelihood of having an autism diagnosis,” she said. “And those genes are genes that tell cells in the brain where to go and how to connect, which seems to be a core biological feature of autism.”

Halladay emphasized that research has established the “most important part is the interaction between genetics and the environment.”

“Neither the gene nor the environmental factor is strong enough, but together, they increase the probability of having a child with autism,” Halladay explained. 

During the last 25 years, as Murray has advanced in his career, the medical community’s thinking about and understanding of autism spectrum disorders has “significantly increased.”

“We know right now that 80 to 90% of autism is accounted for by genetic differences …. It’s not just you got exposed to this thing in the environment, now you have autism. You have to have the genetic susceptibility first and then the environment might make it more likely, or maybe influence the expression of it,” Murray said.

Cascio said that when it comes to environmental factors, studies have shown pregnancy or the very early post-natal time frame are key. 

“We’re still parsing this out, but some of the environmental factors that seem to have more evidence behind them than others are older parental age, perinatal trauma, premature birth and low birth weight,” Cascio said. “And then there’s some maternal health factors that are gathering some evidence as well. So maternal infection and immune response, maternal exposure to medications or pollutants are sort of gathering some evidence.” 

While much more research is needed on the many potential environmental factors, Cascio said scientists know vaccines are not a component. 

“The things that we definitely can rule out are things that have been studied in great depth and not really produced much association. So you know, the idea that vaccines cause autism is a common belief. There have been dozens and dozens of studies that have all failed to find any association between vaccines and autism,” Cascio said.

There’s also not yet a clear link with Tylenol, also called acetaminophen, as a possible environmental factor. 

“It is unlikely that this is the smoking gun that they’re hoping for,” Cascio said. “I think we all want to understand this better, but this is certainly not something that we feel has a strong weight of evidence behind it yet.”

A spokesperson for Kenvue, the company that manufactures Tylenol, wrote in a statement released in connection with the Trump-Kennedy press conference that “acetaminophen is the safest pain reliever option for pregnant women as needed throughout their entire pregnancy.  

“Without it, women face dangerous choices: suffer through conditions like fever that are potentially harmful to both mom and baby or use riskier alternatives. High fevers and pain are widely recognized as potential risks to a pregnancy if left untreated.”

Why have autism diagnoses increased over several decades? 

Health and Human Services Secretary Kennedy has repeatedly raised concerns with an increase in autism diagnoses over several decades, but experts say there are logical reasons for this. 

“In the early 1990s the CDC set up a system to collect and count the number of people with autism,” Halladay said. “So it definitely has increased since then, but one of the main reasons that’s been shown over and over again is access to services.”

Halladay believes most of the increase is due to greater knowledge and access, though she said, “there is room for some of the increase in autism to be a true increase in the number of people with autism due to something else.”

Murray explained that about 60% to 70% of people diagnosed as being on the autism spectrum are characterized as having “low-support needs, meaning that they clearly have the features of autism, but they are able to, with the appropriate level of supports, be in traditional schools or typical schools; they can, with job support, work and lead their lives the way they choose to.”

When Murray began his career, he said, those people never would have been diagnosed as having autism.  

“Secondly, we as a professional community are getting better and better at picking up these symptoms, particularly in kids who are quite young,” Murray said.

During the late 1980s and 1990s, Cascio said, a new version of the DSM and better tools helped medical professionals more accurately diagnose people along the entire autism spectrum. 

Additionally, Cascio said, there’s a similar concept called diagnostic substitution, where people who in the past may have been diagnosed with something else are now being correctly diagnosed with autism. 

How much research has been done on autism and over how many years?

Scientists have been researching autism for decades, building on past work to better understand how to diagnose and assist people across the spectrum, though experts said more is needed.

“The many, many scientific discoveries and funding into understanding autism has promoted scientists moving into the field,” Halladay said. “So there’s clearly an increased number over the past two decades of the number of people who are focused on studying autism.”

Murray said the first papers published in scientific journals regarding autism were in 1944. 

“So it is 80 years, at a minimum, of work,” Murray said.

Murray reiterated that autism spectrum disorders are not simple to study and said a “really important paper came out earlier this year talking about how there’s four genetically recognizable subtypes of autism. So it’s not a single autism. It is, at the very least, four autisms, and probably more.”

Cascio said addressing any aspect of autism is complicated.

“The behavior is complex. The genetics are complex. The brain is complex,” Cascio said. “And so this makes it a huge challenge for research. And there’s certainly no possibility that we would go from not fully understanding the causes of autism to having a definitive cause in five months.”

What are some of the biggest misconceptions about autism? 

The internet has led to misinformation, and in many cases disinformation, and health diagnoses are no exception.  

Halladay said people often try to simplify autism or believe an actor’s portrayal in a television show or movie is representative of everyone on the spectrum. 

“I think that because of the narrative of autism being oversimplified, that people are not understanding that it’s a more complex disorder,” she said. 

Murray said the autism spectrum may be pictured as a straight line and an expectation arises when someone is diagnosed that they are in just one spot. 

“That’s not really the way it is. There are needs or strengths that show up variably depending on the demands of the situation,” Murray said. “So for instance, someone who has a really exquisite sensitivity to sound, if they are attending a symphony, that may make that experience so much more rich for him or her versus the average person. 

“But if they are at a rock concert, it may be overwhelming. The same trait can be a source of vulnerability or a strength depending on the situation.”

Murray said there’s often a misconception that all people with autism are antisocial or don’t want to make and maintain friendships.  

“And that’s true for some people, right? They aren’t really interested in social interactions. It’s not their thing,” Murray said. “It’s also true for some neurotypical people that they’re really not interested in social interactions. But the vast, vast majority of autistic individuals just want a friend, and they want someone who they can count on and rely on. They want to be loved, just like everyone else in the world … They just need more supports or different situations to have that happen.”

Cascio said that people can form misconceptions after seeing actors portray people along the spectrum.

“I first became interested in autism after watching the movie ‘Rain Man,’” Cascio said. “And I think there’s a lot of people who see a depiction like that and think, ‘Okay, this is what autism looks like.’ And there’s just so much more complexity and variability from person to person and I would say that’s probably the biggest misconception.”

Cascio said it’s also human nature to want one clear answer to why someone develops autism or any other health diagnosis, but that oftentimes the best science shows a more complicated picture. 

“It’s uncomfortable for us to say, ‘This is really complex and we don’t understand it yet,’” she said. “And so when there is something that people hold up and say, ‘Here’s an explanation.’ I think it can be really tempting for people to just want to have it solved. And that’s a very natural reaction.”

Dr. Ahmed Obeidat is an artist himself — a poet and a professional photographer. He says his art allows him to reflect on the similarities within structures of nature and neurology.

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In this photo illustration, a pharmacist holds a COVID-19 vaccine. States and clinicians are working on getting correct information on vaccines to vulnerable groups amid shifting federal guidance. (Photo illustration by Joe Raedle/Getty Images)

Heading into the respiratory illness season, states and clinicians are working to encourage pregnant patients to get COVID-19 vaccinations, even though the U.S. Department of Health and Human Services no longer recommends that they should.

Along with being older and having an underlying health condition, pregnancy itself is a risk factor. Pregnant women are more vulnerable to developing severe illness from COVID-19. They’re also at high risk for complications, including preterm labor and stillbirth. The vast majority of medical experts say getting the shot is safe and effective — much safer than having the illness.

But HHS Secretary Robert F. Kennedy Jr. announced in May that the agency would no longer recommend that pregnant women get the vaccine. Before testifying before Congress in June, Kennedy circulated a document on Capitol Hill claiming higher rates of fetal loss after vaccination. But the authors of those studies told Politico that their work had been misinterpreted.

Experts say the federal shift puts the onus on state health agencies to ramp up vaccine guidance and outreach. Clinicians and public health organizations are trying to dispel misinformation and make sure information reaches low-income people and people of color, who had higher maternal death rates during the pandemic. During the first two years of the pandemic, the virus contributed to a quarter of maternal deaths, according to federal data.

“We are severely disappointed,” said Dr. Neil Silverman, a professor of clinical obstetrics and gynecology at the University of California, Los Angeles David Geffen School of Medicine. He has studied vaccines and pregnancy for the past 15 years and specializes in high-risk pregnancies.

Silverman called the federal shift a “public health tragedy on a grand scale.”

RFK Jr. ends COVID vaccine recommendation for healthy children, pregnant people

Vaccinations against COVID-19 help prevent severe illness in pregnant people as well as their newborns, who are too young to get vaccinated, Silverman said. In what’s called passive immunity, vaccinated mothers pass on antibodies to their babies through the placenta and through breast milk.

“State public health agencies are probably going to have to implement vaccine guidance that differs from the federal recommendations. And that’s going to be an interesting can of worms,” said OB-GYN Dr. Mark Turrentine, a professor of obstetrics and gynecology at the Baylor College of Medicine in Texas.

Turrentine serves on a board of the American College of Obstetricians and Gynecologists that focuses on immunization and infectious diseases. He said his recent pregnant patients who had COVID-19 hadn’t gotten the vaccine.

“The change in guidance on the federal level just really makes a lot of confusion, and it makes it very challenging to try to explain to individuals why all of a sudden the difference,” Turrentine said.

A slew of public health organizations have been making a concerted effort to dispel vaccine myths. They include the Society for Maternal-Fetal Medicine, a Washington, D.C.-based nonprofit organization of maternal-fetal experts. At a news briefing the society held this month, clinicians stressed the safety and long-standing science behind COVID-19 vaccines, as well as the shots for RSV and the flu. Cases of RSV and the flu tend to peak in the winter months, while in recent years COVID-19 cases have spiked in the summer and the winter.

Dr. Brenna Hughes, an OB-GYN who chairs the organization’s infectious diseases and emerging threats committee, pointed to survey data from the federal Centers for Disease Control and Prevention showing that less than a third of eligible pregnant patients received COVID-19 shots, and only 38% received RSV shots for the 2023 to 2024 season. Less than half — 47% — received flu shots, and 59% received TDAP (whooping cough) vaccines.

CDC data shows that for last year’s and this year’s season, only between 12% and 14% of pregnant patients got the COVID-19 vaccine.

“The complications from the infection are so much greater than the complications and the very few and typically minor adverse events that might occur from the vaccine,” said microbiologist Sabra Klein, a professor of molecular microbiology and immunology at the Johns Hopkins Bloomberg School of Public Health.

In June, the American College of Obstetricians and Gynecologists and 30 other professional health organizations signed a letter urging insurers to continue covering the COVID-19 shot for pregnant women, and have continued to urge coverage since then.

CVS Caremark, one of the nation’s three major pharmacy benefit managers, told Stateline it will continue covering the vaccine for pregnant women. The Arizona, California and North Carolina state Medicaid agencies also told Stateline they are still currently covering COVID-19 vaccines for pregnant women.

Doulas, midwives and lawmakers challenge erasure of Black women in maternal health care

Dr. Kimberly Fortner, president-elect of the Infectious Diseases Society for Obstetrics and Gynecology, said during the maternal-fetal medicine briefing that she hopes medical groups’ joint messaging will bolster insurers.

“Hopefully by us linking arms, that can then help develop consistency so that insurers will continue to pay for the vaccine,” she said.

Exacerbating disparities

Dr. Ayanna Bennett, director of the District of Columbia Department of Health, said the federal government’s new stance has upended “a system that’s been stable for a very long time.”

Bennett said her agency used federal pandemic aid to shore up vaccine outreach efforts to communities of color. Now that flow of money is ending.

The changes in federal guidance and funding will “almost certainly exacerbate” maternal health disparities, said Marie Thoma, a perinatal epidemiologist and an associate professor in the University of Maryland Department of Family Science who researches pregnancy and COVID-19.

Black and Indigenous women died at higher rates. The virus exacerbated existing racial disparities in maternal health — and created new ones: Latina mothers, who generally see low rates of maternal mortality, saw deaths surge to 28 per 100,000 in 2021. Their rate was about 12 per 100,000 in 2018, according to federal data.

“We are going in with some exposure already that we didn’t have during the start of the pandemic. So, there will be some protection, but now that will erode,” said Thoma. “If we’re not getting vaccines, or if people are hesitant to take them, we could see some increase.”

Silverman said the administration’s efforts to strip mentions of race from government policies makes it difficult for institutions to reach populations at greatest risk. He called the dismissal of decades of data “saddening and infuriating.”

“The politicization of the vaccine process, or access to it, is what concerns me the most,” said Dr. Yvette Martas, a Connecticut OB-GYN who chairs the board of directors of the Hispanic Health Council.

Many women “are trying to navigate an economic system that’s not always in their favor in terms of also providing access to the kind of educational material that they need,” she said.

Not just COVID-19

In June, Kennedy ousted all 17 members of the CDC’s vaccine advisory committee, replacing them with some members who are vaccine skeptics.

The change is creating chaos. Some states have vaccine laws, such as mandates for kids and coverage statutes, that are specifically tied to the committee’s decisions.

The Vaccine Integrity Project at the University of Minnesota called on frontline health workers, health officials and professional societies to “counter the spread of inaccurate and confusing vaccine information.”

At a news briefing this month held by the Association of State and Territorial Health Officials, representatives from Alabama, Connecticut and Washington, D.C., said they will continue to recommend vaccines.

Alabama’s state health officer, Dr. Scott Harris, said clinicians will be instrumental in getting correct vaccination information to patients.

“We don’t think that we necessarily have the same authoritative voice that we might have had a decade ago in trying to guide people in what to do, but we do believe that people trust their health care providers in most cases and are certainly willing to listen to them,” he said at the briefing.

Bennett said she is hopeful that strong, consistent messaging from respected medical organizations will help combat confusion.

“Having established groups like the American Academy of Pediatrics or the American College of Obstetrics and Gynecology make very firm recommendations that keep us essentially not changed from where we have been, I think, should reassure families,” she said.

Stateline reporter Nada Hassanein can be reached at nhassanein@stateline.org.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org.

The state of Wisconsin is offering up to $100 million in performance-based tax incentives to support pharmaceutical giant Eli Lilly’s $4 billion investment in Kenosha County, Gov. Tony Evers announced Tuesday.

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According to a Wisconsin clinical pharmacist, advancements in epilepsy treatment research include genetics, medical devices and prescription CBD.

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As global energy use continues to rise, the demand for renewable energy sources such as biofuels is also growing—especially in the transportation sector. Now, researchers at The University of Texas at El Paso have demonstrated how nanotechnology can significantly improve biofuel production from microalgae, offering a sustainable path forward.