When Nayeli Calderon’s son Sebastian was 2 years old, a daycare teacher suggested she get him tested for autism.
That’s when she said the work, and the waiting, began.
Sebastian joined a month-long waitlist for a neurologist, who saw him for a few months and then diagnosed him with autism.
After the diagnosis came the search for therapists — speech, occupational, physical, behavioral. Calderon was able to get Sebastian into Early Childhood Intervention, a statewide program that helps children and families address developmental delays. But those services ended when Sebastian turned 3. Calderon had to start all over again.
“It just takes making so many phone calls and getting him into the right clinic,” Calderon said. “It all takes so much time, and by the time he turned 3, I still couldn’t get anything done.”
Calderon and other parents told The Barbed Wire that having a child on the spectrum is like a full-time job. They must be caregivers, therapists, advocates, and organizers. There’s never enough assistance; securing resources is never simple; insurance is a quagmire.
Not on their long list of concerns? Tylenol.
Yet, somehow, the state of Texas is suing Tylenol’s parent company over unproven claims pushed by Health Secretary Robert F. Kennedy Jr. and President Donald Trump in a September press conference. Kennedy and Trump shared a theory inconsistent with current medical standards: that use of the painkiller during pregnancy is linked to autism.
Existing research does not suggest that acetaminophen, the ingredient in Tylenol, causes autism. In a study published earlier this month in the British Medical Journal, researchers concluded that the evidence doesn’t support a link between acetaminophen use in pregnancy and autism and ADHD.
“Acetaminophen is still the safest known drug to take during pregnancy for problems like fever and pain,” said Ob/Gyn Salena Zanotti, MD, in a fact sheet released in October by Cleveland Clinic. “It’s OK to turn to medication for help when symptoms are making your daily life difficult.”
Zanotti’s assertion is supported by the American College of Obstetricians and Gynecologists, the Society for Maternal-Fetal Medicine, and the American Academy of Pediatrics. When used properly, acetaminophen is safe to take during pregnancy — both for the pregnant person and the developing fetus, all of those organizations have said. In fact, left untreated, fevers themselves can cause significant harm to a fetus: risks include miscarriage and birth defects.
Despite the science, Texas Attorney General Ken Paxton has accused Johnson and Johnson, and its corporate subsidiary Kenvue, of failing to warn consumers about the risk of taking Tylenol while pregnant. In early November, Paxton asked a federal judge for a restraining order to block the company from advertising to consumers that the drug is safe for use during pregnancy. Paxton also tried to block Kenvue from paying its shareholders, a move that could have encouraged the company to settle the lawsuit. A judge denied the request.
RFK Jr. has walked back some of his earlier claims on Tylenol, but Paxton has marched on, frustrating many in the autism community.
“The focus is in the wrong place,” said Jolene Pohl, advocacy director at Coalition of Texans with Disabilities. “We’re going to spend a whole lot of taxpayer dollars on suing a company because there’s this myth about causation, instead of actually investing that money in services and supports to help people.”
The majority of Texas counties, primarily in rural areas, do not have access to a therapist certified to provide applied behavior analysis, or ABA, a widely used research-based therapy. (Once considered a standard in treatment, ABA has more recently come under scrutiny for claims of exaggerated impact and even allegations of abuse.) Texas waitlists for long-term care stretch for years and insurance coverage varies by plan; even insurance that does cover autism services often leaves families waiting for approvals, as The Houston Chronicle and ProPublica have reported.
The Trump administration’s coming Medicaid cuts could also mean cuts to essential services for individuals with autism.
“What’s suing Tylenol going to do? Is it going to help the kids? Is it going to bring more awareness? Is it going to get our kids diagnosed more early?” Calderon said. “If it’s not affecting the kids on the spectrum in the least bit, then what’s the point?”
“It often feels, in the early stages, like begging”
Cathi Rae first expressed concerns to her son’s doctor when he was 18 months old. She noticed that Noah didn’t seem to remember things like bumping his head, and he wasn’t using as many words as other kids his age.
“Early intervention is the key to success when it comes to autism,” Rae said. “The earlier that you can catch it, the earlier that you can provide services, the earlier that you can get these accommodations, the odds of those children being successful increases dramatically.”
Rae said she tried to advocate for her son, but Noah’s doctor wanted to wait and observe more signs. By the time Noah was 4, he had undergone multiple hearing tests to ensure that his lack of words wasn’t due to his hearing. That’s when Rae’s insurance finally allowed for Noah to receive speech therapy, where he got a partial diagnosis with a language barrier.
He started receiving some services, but due to both pandemic closures and clinic waitlists, Noah didn’t receive a full autism diagnosis until he was 6.
Research has shown that early intervention, which could start at age 2, is more likely to have long-term positive impacts for kids with autism as they progress and develop later skills. But for many families, the process of obtaining a diagnosis, getting approval through insurance and accessing these necessary services can take months or even years and many children miss that early intervention phase.
The average age of autism diagnosis in Texas is 4.8 years old, on par with the national average, according to Autism Speaks’ National Survey of Children’s Health in 2021. However, 14% of parents in Texas reported their child experienced unmet healthcare needs, higher than the national average of 11%.
After Noah received a diagnosis, he was able to start applied behavior analysis. Most insurance companies, as well as Texas Medicaid, require a full autism diagnosis to cover these therapy services. In a 2023 survey from the Centers for Medicare & Medicaid Services, nearly two-thirds of autism specialty centers reported wait times longer than four months for autism evaluations.
“All this about suing pharmaceuticals, it’s about money. It’s about politics.”
“Parents are the experts on their kids, and it often feels, in the early stages, like begging,” Pohl said. “‘There’s something going on here, please, lead me in the right direction.’”
Pohl’s son was 3 when he was diagnosed with autism.
“The process was literally doing an assessment and then handing me a sheet of paper that says, ‘Okay, your son has autism. We’ll see you in six months,’” Pohl said. “I didn’t know what to do with that.”
Pohl knew that getting him early services was critical, but it’s hard to follow all of the right steps when there’s no navigator to help families, especially because autism services are not one-size-fits-all.
“It takes a whole lot of advocacy on the part of the parents, first to get up to speed and realize I need to have this level of education in special education and then advocating,” Pohl said. “It becomes a full-time job.”
The recent focus on Tylenol, and the previous and inaccurate focus on vaccines as the cause of autism, centers the conversation around finger-pointing and assigning blame, even though autism is far more likely to have developed from genetic and environmental factors. This does nothing to support families, Pohl said, but only doubles down on what she describes as the “suffocating” feeling of blame that many parents of children with autism are already familiar with.
“The first thing that hits you (when your kid is diagnosed) is, what did I do? Did I do something? Did I eat something? Did I, like, leave a heating pad on my leg too long?” Pohl said. “You go down a rabbit hole of guilt or trying to figure out what happened.”
Rosamarie Ibarra, a Houston mom, didn’t know much about autism when her son Hector was diagnosed at the age of 3, but she felt like she needed answers.
“I did all these blood tests, trying to blame somebody. Then I blamed God. But the thing is, they don’t know,” Ibarra said. “All this about suing pharmaceuticals, it’s about money. It’s about politics.”
“Insurance, insurance, insurance”
Texas law has required state-regulated healthcare plans to cover services for children with autism since 2007, including some types of therapy and medications. But that did not cover behavioral therapy until 2022 — after years of advocacy.
Calderon’s family is on Medicaid. She knows they have been lucky that Medicaid has approved all of Sebastian’s services, but it’s often a long wait.
“I share that with so many moms — ‘Oh, insurance, insurance, insurance’ We have been waiting so long for our kids to get the help that they need,” Calderon said. “We don’t have time to be waiting around for the insurance to get on top of it.”
Although Texas has made significant progress, Pohl said the state still has a long way to go, noting remaining challenges like growing an adequate provider pool, increasing reimbursement rates, and ensuring access for Spanish-speaking families. But as Medicaid cuts are coming, Pohl is afraid that the state will be going backwards.
“It’s kind of like we climbed up this very steep mountain and we didn’t live there very long, and now we’re going back down,” Pohl said.
Calderon said cuts to services or increased premiums could make a big difference for her family.
“It scares me. It’s a really big concern,” Calderon said. “We need so much help. We need so many things. We can’t get him certain things because of these cuts.”
Many other families, like Rae’s, are on employer or self-funding insurance plans, which are federally regulated and do not have to comply with the state standards.
After two years of attending the ABA center full-time, Noah was ready to transition to public school this year at the age of 8. Rae wanted him to continue receiving ABA therapy, and the school and center agreed on a plan for an ABA therapist to accompany Noah at school.
But insurance denied it.
It was in a school setting, and services considered educational are not typically covered.
“They denied my child, with an intellectual disability, services because it’s going to be in an educational setting,” Rae said. “For them to put those types of barriers is unfair and unethical.”
At the advocacy group Texans Care for Children, senior policy associate for early learning, Lauren McKenzie, is working on another way for children with disabilities to receive earlier care, no insurance required. McKenzie hopes to get legislation passed that would make kids with disabilities eligible for Texas public pre-K, a program that is currently limited to a few eligibility categories including children who are low-income, homeless, emergent bilingual, or in foster care.
The provision received bipartisan support in the House last session and was included in the big school finance bill, but it was not included in the Senate version of the bill that ultimately passed.
“If you have a 4-year-old who has a language delay, they’re absolutely going to benefit from really targeted intervention with a speech language pathologist,” McKenzie said. “And they’re also probably really going to benefit from being in a classroom where everyone is talking, they’re with their peers who are using appropriate language, they have a teacher who’s speaking with them for the full day of instruction.”
“We’re still on the waitlist”
After Ibarra’s son Hector was diagnosed with autism, she threw herself into learning about the services he would need, but she didn’t learn about Medicaid waivers for long-term care until she connected with a social worker who told her she needed to sign Hector up immediately.
Most Texans rely on Medicaid waivers to cover the enormous costs of long-term services like in-home care, group homes, residential services and day programs. The waivers let states use Medicaid funds for these services for individuals with disabilities while waiving certain Medicaid requirements like family income. People who receive these waiver services also get full Medicaid health care benefits.
A 2023Austin American-Statesman investigation found that about 158,000 people were on Texas’ waitlists for these waivers, with just 1,550 spots available for the year. Some lists have more than a 15-year wait, according to Navigate Life Texas, a resource site for families of children with disabilities. They recommend that families add their child to every list as soon as they receive a diagnosis. The hope is that by the time their child is old enough to need these long-term services, they will have reached the top of the list.
Ibarra put Hector on three lists and called every year to update his information and check on his place. That was when Hector was 3. He reached the top of the lists when he was 19, when he was able to receive Home and Community-based Services. Through the program, Hector is able to attend a day program that Ibarra said he loves, and she was able to afford to quit her job to take care of Hector and her younger son full-time.
“When I know a parent whose kid has just been diagnosed, I immediately tell them: ‘Put them on the list,’” Ibarra said. “Maybe you don’t know what it is right now, but in the long run it’s going to help you.”
Although Pohl’s son was diagnosed with autism when he was 3, she didn’t know about the Medicaid waivers until he was 8. She immediately put him on all the interest lists, not knowing what he might need a few years down the line.
“My son is 21 now,” Pohl said. “And we’re still on the waitlist.”
Most states screen individuals for eligibility before adding them to waitlists, but the eight states that do not, including Texas, account for over half of all people on waiver waiting lists nationwide.
“It keeps getting longer and longer the less that our legislature funds it,” Pohl said. “That is complete failure by decision-makers at the state level to just ignore it and not address it.”
Ibarra’s son is 25 now, and she said she doesn’t have any spare energy for lawsuits against medications that may not have even caused harm.
“Right now, I’m just concentrating on my son being happy,” Ibarra said. “He needs to learn life skills, and he needs a place where he can work a couple of hours and be more independent.”
Early on in Noah’s journey with autism, Rae promised herself that when he reached a stable place with his services, she would work to help families coming up behind her.
This year, after he started at public school, she transitioned to working as a special needs advocate full-time, hoping to provide parents with younger kids the same advice and support she received.
She knows that the Tylenol lawsuit won’t change the time that families have to wait for services, the challenges of getting a diagnosis, or the threat of Medicaid cuts.
“Autism seems to be a buzzword right now,” Rae said. “People only seem to care about autism when it fits their political agenda. But these are our lives. We have to live this every single day.”
This story has been updated with additional context on Applied Behavioral Analysis, and recent pushback on the once popular treatment.