Children's Health Defense's Wacko Conference

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

 At The Atlantic, Tom Bartlett reports on the annual conference of Children’s Health Defense, RFK Jr's antivax organization.

They want Kennedy to investigate their belief that the government supposedly colluded with Big Pharma to hide the harms of vaccination. In a session on Saturday afternoon, former Republican Representative Dave Weldon, whose nomination to become CDC director was withdrawn in March amid outcry over his criticism of immunizations, called for the creation of an independent body to investigate vaccine-safety data and report only to Kennedy and President Donald Trump. “If it’s in the hands of the CDC, you’ll never get the answers you need,” he told the crowd. During a session titled “The Enduring Nightmare of COVID mRNA Technology,” Sherri Tenpenny, a veteran anti-vaccine activist who once said that one goal of COVID vaccination was to turn people into “transhumanist cyborgs,” called for the mRNA-based vaccines to be taken off the market: “It’s just the next level of atrocity of how they want to damage us and make us customers for life.” Mark Gorton, the founder of LimeWire who is now president of the MAHA Institute, a think tank, favors stopping routine shots altogether until they’ve undergone further testing. “The medical establishment will scream that plagues will sweep across the land,” he said from the stage. “We need to counter that their plague of vaccine poisoning is already amongst us.”

As noted before, the antivax movment overlaps with right-wing conspiracy theory.

The forces aligned against Kennedy, everyone at the conference seemed to agree, are formidable. Leslie Manookian, the president of the Health Freedom Defense Fund and the author of a recently passed Idaho law that makes vaccine mandates illegal, railed against the “pit of vipers” that Kennedy must deal with in Washington. In a session titled “Sustaining the Promise of Freedom Through Action,” the crowd applauded when Joseph Ladapo, Florida’s surgeon general, announced that the reporters from The Atlantic and The Washington Post in the room “represent forces who are working toward the enslavement of humanity”—though he allowed that he had “nothing against them.” (As The Atlantic’s editor in chief, Jeffrey Goldberg, told the Post, “In fact, The Atlantic is not working towards the enslavement of humanity, but I appreciate his concern.”) Ladapo spent most of his speech expounding on his experience with psychotherapy and his relationship with his wife. The day after Brand declined to speak with me and called me a Nazi, Alex Jones posted a two-hour interview in which a bathrobe-clad Brand dismissed the allegations against him as a “governmental and media operation.”

Some Education Staffers Are Back. Don't Get Your Hopes Up.

 In The Politics of Autism, I discuss the issue's role in presidential politics. Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they tried firing most of the staff who enforce it. 

Cory Turner at NPR:

The deal Congress reached to re-open the federal government requires the Trump administration to reinstate federal workers who were fired in October, including those charged with overseeing the nation's special education laws. But it's not clear how long they'll be back.

As NPR has reported, the Office for Special Education and Rehabilitative Services (OSERS) inside the U.S. Department of Education is the central nervous system for programs that support students with disabilities. It not only offers guidance to families but also oversees state compliance with the Individuals with Disabilities Education Act (IDEA).

OSERS can't do its job without staff, and, according to a new Education Department filing, the office lost 121 of its 135 employees in the October reduction-in-force. That matters because, while Wednesday's funding agreement will return those workers to "employment status" as of Sept. 30, there appears to be little protecting them after Jan. 30, when that provision expires.

 "We are concerned special education will cease to exist," says Jacqueline Rodriguez, CEO of the National Center for Learning Disabilities. ... If OSERS stays a shadow of its former self, Rodriguez says, "the only conclusion that we can draw is that it is an intentional dismantling of the entire system of special education."

The Office for Civil Rights has also taken a big hit.

OCR lost 299 staffers after the March reduction-in-force but, because of a lawsuit, most (247) remain on temporary, paid administrative leave. Another 137 were cut in the October reduction-in-force, which has been paused by a federal judge. Under the new government funding agreement, those 137 staffers should be reinstated, at least until Jan. 30.

By the department's own numbers, that means just 62 staffers of OCR's current 446 employees have not received RIF notices. That's roughly 10% of the office's 600-plus headcount in January, when the second Trump administration began.

OCR and OSERS are both mandated by federal law.

"I've got to say, I'm just shocked that they can destroy an entire unit of an organization that's created by statute," said R. Shep Melnick, a professor of American politics at Boston College who has been writing about OCR for decades.

Acting IG at Education

  In The Politics of Autism, I discuss the issue's role in presidential politics. Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they are firing most of the staff who enforce it.  A judge has temporarily paused the attack, but the administration will likely find ways to ignore or circumvent the order.

Sean Michael Newhouse at Government Executive:

The acting inspector general at the Education Department is being replaced for the second time this year, and the watchdog’s new leader is an IG official who seems to have shared social media posts supporting Donald Trump.

Mark Priebe will be the new acting Education IG, according to a 30-day notice sent to Congress on Nov. 7. He has been the director of the Non-Federal Audit Team at the Education IG office since 2017 and previously worked as an auditor at the Housing and Urban Development Department and Federal Energy Regulatory Commission, according to his LinkedIn.

The president is permitted to replace an acting IG, but he is limited to selecting an individual who is currently working in an IG office.

An X account that appears to belong to Priebe occasionally shared messages from other accounts that back Trump including:

The Education IG position opened up after Trump fired Sandra Bruce in January along with 16 other agency watchdogs. Deputy Education IG René Rocque then became acting IG, but she was replaced this summer after notifying Congress that officials were stonewalling an investigation into staff reductions that have halved the department’s workforce.

Nature Medicine: Autistic People Deserve Science-Based Policy

 A number of posts discussed Trump's support for discredited notions about autism. The Sept 22 White House news conference was a firehose of lies. Last month, he posted an unfounded warning about Tylenol.  RFK then tiptoed away from the idea that it definitely causes autism.

From an editorial in Nature Medicine:

Recent public discourse in the USA has been marred by the propagation of claims about the causes of autism that do not reflect current scientific consensus and disregard an extensive research body indicating that there is no single root cause of autism. US Secretary of Health and Human Services Robert F. Kennedy Jr. has made identifying the causes of autism a focal point1 of his tenure. While understanding the origins of autism is important, the approach must be grounded in rigorous, unbiased science and informed by the lived experiences of people with autism and their families. So far, this standard does not seem to have been met.

Within the first 10 months of the current administration, senior officials have advanced a series of assertions linking autism to childhood vaccines, prenatal acetaminophen2 (Tylenol) use, and even circumcision3. These claims reflect a broader pattern of science communication that prioritizes ideology over evidence, often relying on selective data interpretation4 while disregarding the broader scientific literature. This approach marginalizes experts, advocacy organizations, and — most importantly — people with autism and their families.

The consequences of such rhetoric were immediate and far-reaching. A national poll conducted shortly after a press conference in which Secretary Kennedy and President Trump alleged a causal link between prenatal Tylenol use and autism found that 77% of respondents had been exposed to the claim5. Alarmingly, 60% expressed uncertainty about its validity. This confusion is not benign. Acetaminophen is considered the safest choice of analgesic and antipyretic for use during pregnancy; systematically discouraging its use could endanger maternal and fetal health.

Moreover, the language employed in these public statements risks perpetuating stigma. Framing autism as a condition to be ‘cured’ or attributing blame to parents6 reinforces harmful stereotypes and undermines the dignity of people with autism. It is imperative that public communication about autism be accurate, respectful and reflective of neurodevelopmental diversity.

While understanding autism’s causes remains a legitimate scientific goal, it must not eclipse the urgent need to improve the quality of life for people with autism across their lifespan. The US National Institutes of Health’s Autism Data Science Initiative, launched earlier this year with over $50 million in funding across 13 projects, focuses mainly on early-life exposures and the perceived rise in autism prevalence. Although such efforts are valuable, they must be complemented by research into aging, comorbidities and service delivery. Notably, the 2020 Interagency Autism Coordinating Committee report found that less than 13% of autism research funding was allocated to lifespan issues, services and support — an imbalance that must be urgently addressed.

Equally important is the inclusion of people with autism in shaping the research agenda. Participatory research models that prioritize co-creation and community engagement are more likely to yield findings that translate into meaningful improvements in care and policy. Yet, as of this writing, the Interagency Autism Coordinating Committee — the only federal advisory body with representation from the autism community — has not publicly announced a convening since the start of the current administration. This absence raises concerns about the inclusivity and legitimacy of recent policy and funding decisions.

Responsibility for restoring scientific integrity in autism research and policy must be shared. Advocacy organizations such as the Autistic Self Advocacy Network, the Autism Society and the Academic Autism Spectrum Partnership in Research and Education have taken commendable steps to counter misinformation and promote community-engaged research. 

References

1. Seitz, A. PBS News https://go.nature.com/49E5GKv (10 April 2025).
2. Hamilton, J. Noguchi, Y. & Greenfieldboyce, N. NPR https://go.nature.com/4qJlEch (22 September 2025).
3. Beaumont, T. & Ungar, L. PBS News https://go.nature.com/3LAfWcE (10 October 2025).
4. FactCheck.org. Annenberg Public Policy Center https://go.nature.com/47nNCTu (3 February 2025).
5. Shutt, J. The Highland County Press https://go.nature.com/4oGeTGn (23 October 2025).
6. Kim, J. NPR https://go.nature.com/4nGKZRB (26 September 2025).

 

Lit Review Undercut Tylenol Accusation

 A number of posts discussed Trump's support for discredited notions about autism The Sept 22 White House news conference was a firehose of lies. Last month, he posted an unfounded warning about Tylenol.  RFK then tiptoed away from the idea that it definitely causes autism.

Medical Xpress:

Existing evidence does not clearly link paracetamol (acetaminophen) use during pregnancy with autism or ADHD in children, finds an in-depth evidence review published by The BMJ today, in direct response to recent announcements around the safety of using paracetamol in pregnancy.

The researchers say confidence in the findings of existing evidence reviews and studies on this topic is low to critically low, and suggest that any apparent effect seen in previous studies may be driven by shared genetic and environmental factors within families.

Regulatory bodies, clinicians, pregnant women, parents, and those affected by autism and ADHD should be informed about the poor quality of the existing reviews and women should be advised to take paracetamol when needed to treat pain and fever in pregnancy, they add.

Paracetamol (acetaminophen) is the recommended treatment for pain and fever in pregnancy and is considered safe by regulatory agencies worldwide.

Existing systematic reviews on this topic vary in quality, and studies that do not adjust for important factors shared by families or parents' health and lifestyle cannot accurately estimate the effects of exposure to paracetamol before birth on neurodevelopment in babies.

To address this uncertainty, researchers carried out an umbrella review (a high-level evidence summary) of systematic reviews to assess the overall quality and validity of existing evidence and the strength of association between paracetamol use during pregnancy and the risks of autism or ADHD in offspring.

...

They conclude, "The current evidence base is insufficient to definitively link in utero exposure to paracetamol with autism and ADHD in childhood. High quality studies that control for familial and unmeasured confounders can help improve evidence on the timing and duration of paracetamol exposure, and for other child neurodevelopmental outcomes."

Literature on Autism and Aging

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families.  The struggles of autistic adults have not received enough scholarly attention.

Mokhwelepa, L.W., Sumbane, G.O. & Ngwenya, M.W. The dynamic trajectory of autistic life and its changing challenges: a scoping review. BMC Psychiatry 25, 769 (2025). https://doi.org/10.1186/s12888-025-07212-5

Abstract

Background

There is a noticeable knowledge vacuum on the ways in which autism interacts with the difficulties associated with aging, even though in recent decades there has been a growing recognition of the different needs and experiences of those on the autistic spectrum. Importantly, experiences across earlier life stages such as youth and young adulthood also influence later outcomes and warrant consideration within this dynamic trajectory, meaning the ongoing and evolving developmental path individuals follow throughout life.

Objectives

This study aimed to review the existing literature on the unique needs, challenges, and experiences of autistic adults as they progress into later stages of life.

Methodology

The scoping review was carried out by following a structure that included defining the research topic, finding pertinent studies, choosing studies, charting data, and ultimately compiling, summarizing, and synthesizing the findings, the scoping review was carried out. PubMed, PsycINFO, Google Scholar, and ScienceDirect are the databases that were used to perform an exhaustive search of the literature from 2010 to 2023. Studies were screened for inclusion based on predefined criteria.

Results

Despite an initially large dataset, only a limited number of studies directly addressed the intersection of autism and aging in sufficient depth. This review yielded only two themes: (1) Challenges experienced by adults with autism when aging; (2) interventions and support strategies.

Conclusion

The important need for greater comprehension of the relationship between autism and aging was highlighted by this study. It exposed a wide range of difficulties that autistic adults encounter as they age, such as inequalities in healthcare and problems integrating into society. This review will contribute to a deeper understanding by highlighting the evolving challenges, unmet needs, and support mechanisms required by autistic adults as they age, offering insights for research, policy, and practice.

Advocacy Programs for Latino Families

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

Burke, M. M., S. Ramos-Torres, G. H. Espinosa, et al. 2025. “ Testing an Advocacy Program to Improve Service Access Among Latino Families of Autistic Youth: A Randomized Controlled Trial.” Autism Research 18, no. 8: 1714–1724. https://doi.org/10.1002/aur.70068.

ABSTRACT

Families of transition-aged youth with autism often struggle to access services. Due to systemic barriers, Latino, Spanish-speaking families of autistic youth especially struggle to access services. One way to improve service access is through parent advocacy abilities (i.e., knowledge of adult services, advocacy abilities and comfort, empowerment). To improve parent advocacy abilities and, ultimately, service access, we conducted a randomized controlled trial to test the feasibility and efficacy of an advocacy program: ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). Of the 30 participants who were retained for analyses, intervention (vs. waitlist-control) group participants demonstrated significant increases in knowledge about adult services, advocacy activities, advocacy skills and comfort, and empowerment. Further, intervention (vs. waitlist-control) group participants demonstrated significantly greater service access. Implications for research and practice are discussed.

Trial Registration: clinicaltrials.gov: NCT06207149

Summary

• It can be hard to find services for autistic youth.
• There are unique barriers to services for Latino autistic youth.
• To improve access to services, we tested an advocacy program (called ASISTIR).
• The ASISTIR program was comprised of 24 h of instruction about adult services.
• Altogether, 30 families participated in the study.
• Some families were randomized to the intervention group, and some families were randomized to the waitlist-control group.
• Families in the intervention group were significantly more likely to be knowledgeable about adult services, comfortable with advocacy, and empowered.
• Intervention group families also reported greater services.

Vaccines, Autism, and Public Knowledge

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  Trump has long spread antivaccine misinformation. A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

 From the Annenberg Public Policy Center:

No evidence vaccines cause autism: About two-thirds of the public (65%) say it is false to claim that vaccines given to children for diseases like measles, mumps, and rubella cause autism, though that represents a significant decrease from prior years (June 2021-July 2024), when 70-74% of the public agreed it was false to link autism with vaccines. In 2004, the National Academy of Medicine (then named the Institute of Medicine) determined that “the body of epidemiological evidence favors rejection of a causal relationship between the MMR vaccine and autism evidence.” The CDC, on a web page dated Dec. 20, 2024 (accessed Oct. 29), wrote that “studies have shown that there is no link between receiving vaccines and developing ASD” (autism spectrum disorder).

...

No evidence of an autism-thimerosal link: Thimerosal, a mercury-based preservative used in some vaccines since the 1930s, has been the target of unfounded and misleading claims by anti-vaccine advocates, including claims that it is ineffective, a neurotoxin, and may be tied to autism. In its 2004 report, the National Academy of Medicine determined that evidence “favors rejection of a causal relationship between thimerosal-containing vaccines and autism.” Numerous studies since have also supported thimerosal’s safety, according to FactCheck.org. Thimerosal has not been in childhood vaccines other than flu vaccines since 2001. In July 2025, Kennedy signed off on recommendations by the CDC’s Advisory Committee on Immunization Practices to remove thimerosal from U.S. flu vaccines.

Asked about any connection between thimerosal and autism, half of those surveyed (51%) are not sure whether thimerosal increases, decreases, or has no effect on the chances that a person getting a vaccine will develop autism. Over a third (37%) correctly say it has no effect on the chances of developing autism, and 10% say it increases the chances.

Gutting Civil Rights Enforcement

 Center for American Progress:

  In The Politics of Autism, I discuss the issue's role in presidential politics. Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they are firing most of the staff who enforce it.  A judge has temporarily paused the attack, but the administration will likely find ways to ignore or circumvent the order.

Center for American Progress:

The Department of Education’s Office of Civil Rights (OCR), which provides enforcement of civil rights protections, fielded a historic 22,687 cases, with 37 percent—8,457—relating to disability, which was second only to sex discrimination. The Trump administration attempted to lay off more than 250 OCR employees in March 2025. In April, Victim Rights Law Center, a nonprofit organization, filed a lawsuit against the department and was able to get a preliminary injunction to force the department to bring staff back. In August, the administration utilized the previously mentioned Supreme Court shadow docket decision made in July to obtain a ruling by the U.S. Court of Appeals for the First Circuit to finalize the OCR layoffs in October. With approximately 120 employees left, if cases remained consistent with last year, the office would have to manage almost 190 cases per employee. Larger caseloads could   In The Politics of Autism, I discuss the issue's role in presidential politics. Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they are firing most of the staff who enforce it.  A judge has temporarily paused the attack, but the administration will likely find ways to ignore or circumvent the order.

Center for American Progress:

The Department of Education’s Office of Civil Rights (OCR), which provides enforcement of civil rights protections, fielded a historic 22,687 cases, with 37 percent—8,457—relating to disability, which was second only to sex discrimination. The Trump administration attempted to lay off more than 250 OCR employees in March 2025. In April, Victim Rights Law Center, a nonprofit organization, filed a lawsuit against the department and was able to get a preliminary injunction to force the department to bring staff back. In August, the administration utilized the previously mentioned Supreme Court shadow docket decision made in July to obtain a ruling by the U.S. Court of Appeals for the First Circuit to finalize the OCR layoffs in October. With approximately 120 employees left, if cases remained consistent with last year, the office would have to manage almost 190 cases per employee. Larger caseloads could force slowdowns in cases that already can last for years.

Without Federal Oversight, Special Education Will Likely Deteriorate

  In The Politics of Autism, I discuss the issue's role in presidential politics. Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they are firing most of the staff who enforce it.  A judge has temporarily paused the attack, but the administration will likely find ways to ignore or circumvent the order.

Anna Claire Vollers at Stateline:

The court ruling halting the layoffs is likely just a temporary setback as Trump proceeds with his broader mission of closing the federal department. Trump and Education Secretary Linda McMahon have said their goals are to reduce bureaucracy and return more education responsibilities to the states.

Neither the Department of Education nor the White House, which are operating with fewer communications officers because of the government shutdown, responded to Stateline requests for comment.

Congress has never fully funded special education at 40% per-pupil costs promised to states under IDEA. Funding has fluctuated over the years; in 2024, it was about 10.9%. Federal IDEA funding is expected to continue, though without federal oversight from the Education Department.

Disability rights and education advocates worry that most states don’t have the resources — or, in some cases, the will — to adequately police and protect the rights of students with disabilities.

years have failed to provide adequate special education services, prompting investigation from the feds. Just 19 states meet the requirements for serving students with disabilities from ages 3 through 21, according to the most recent annual review from the Department of Education, released in June.

...
The federal government currently covers less than 12% of the costs of special education services nationwide, leaving state and local governments to foot the rest, according to the National Education Association, a labor union representing 3 million educators nationally. Without federal oversight, critics fear, nobody will hold states and school districts accountable for not spending enough.

In some states, limited state funding means a disproportionate financial burden lands on individual school districts. On average, local districts are responsible for $8,160 per special education student per year, according to a report released last year by education nonprofit Bellwether that studied funding across 24 states.

The US and Canada Will Likely Lose Measles Elimination Status

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

Stephanie Pappas at Scientific American:

If current trends continue, North America could soon become a hotspot for permanent measles transmission. Canada could lose its measles-free designation this week, and the U.S. may not be far behind.

A key measles and rubella committee of the Pan American Health Organization (PAHO) will meet this week to discuss whether North American countries have lost their measles elimination status, meaning the measles virus has become endemic in those nations. A country is considered to have endemic measles if there has been uninterrupted transmission from a single outbreak of the virus that has lasted 12 months or longer.

Canada has likely already passed that milestone; the country has seen a single outbreak of more than 5,100 measles cases since October 2024, according to its health data. The U.S. is also on shaky ground. A 762-case outbreak in West Texas that started in late January 2025 was declared over on August 18. But health officials are investigating ongoing outbreaks in South Carolina and Utah. If the investigation can link those outbreaks to the original cases in Texas, and if health authorities can’t bring them under control before January 2026, the U.S. may lose its measles elimination status as well.

“I expect we will lose our elimination status,” says David Higgins, a professor of pediatrics at the University of Colorado School of Medicine. “We are marching right toward that.”

Parents Are Vulnerable to Autism Quacks

 Autism parents are highly vulnerable to pitches for quack "cures."

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

Trisha Thadani at WP:

Wrangling three children with autism consumed Dana Paduchowski’s days in a chaotic swirl, her weeks dissolving into a blur of routines and meltdowns. When the house finally quieted at night, the mother would stay awake for hours scouring the internet for a magic treatment that didn’t exist.

Instead of finding answers, Paduchowski said, she constantly stumbled into expensive “rabbit holes of broken promises.”

Over the past few years, Paduchowski estimates, she and her husband have spent at least $30,000 on unproven alternative treatments for her children: An intravenous therapy to remove heavy metals from her son’s body. A clinic with hyperbaric oxygen chambers. Supplements, new diets and naturopathic doctors. While some helped in small ways, others made no difference. In a few cases, she said, her children became “sick and pale” or regressed.

“I just thought, ‘Oh, we’re gonna get this test, and then we’re gonna get results, and then we’re going to fix this one thing and then he’s going to talk and break out of his autism shell,’” she said on a recent afternoon standing in her kitchen, as 15-year-old Caleb, her oldest, jumped and flapped his arms to an episode of “Sesame Street” blaring on the TV.

“But none of that has ever happened,” she said.

... 

.Fringe treatments for autism have long tempted some individuals and families struggling with the disorder, which is a neurodevelopmental condition that presents itself differently in each person. There’s little evidence of effectiveness for common alternatives to behavioral therapy that are widely cited on the internet, according to a study this year in the Nature Human Behavior journal. Still, the study found, up to 90 percent of autistic individuals reported having tried some type of alternative treatment at least once in their lifetime.

Leucovorin

A number of posts discussed Trump's support for dubious notions about autism.

The history of autism "cures" is a history of dashed hopes and frequent danger.

Julie Steenhuysen at  The Independent:

A drug endorsed by the Donald Trump administration which allegedly treats against a rare disorder that causes autism-like symptoms has triggered a surge in demand from parents, despite a lack of data supporting its use.

More parents in the U.S. are asking for leucovorin, believing it could unlock speech and social connection in their autistic children.

Pediatricians and specialists caution the science on leucovorin in autistic people as the data is limited and does not support widespread use.

...

“My Facebook feed is flooded with parents swearing that leucovorin works,” said Dr. David Mandell, a professor of psychiatry and autism researcher at the University of Pennsylvania.

...

Mandell and other scientists and doctors say Trump’s endorsement, without requiring large, randomized clinical trials, leaves practitioners facing emotional pleas from families while lacking data, guidance or confidence to prescribe the drug responsibly.

Leucovorin is approved to treat chemotherapy side effects but can be prescribed off-label for autism symptoms.

"It puts physicians in a very tough position because they're being asked to prescribe something that is not evidence-based," said Dr. Shafali Jeste, an autism expert and head of pediatrics at UCLA, who does not prescribe leucovorin despite repeated requests.

From the American  Academy of Pediatrics:

Autistic children, adolescents, and young adults are valued members of our communities, and they deserve access to evidence-based care supported by high-quality research. Autism is a complex neurodevelopmental condition with diverse presentations and no single known cause. Current research points to a combination of genetic and environmental influences. For decades, autistic individuals have been subjected to treatments based on unproven theories—some of which caused harm with little to no benefit. As such, any new intervention must be carefully evaluated for both its potential benefits and risks before being widely adopted.

At this time, the American Academy of Pediatrics (AAP) does not recommend the routine use of leucovorin (folinic acid) for autistic children.

Early, small-scale studies have explored its use—particularly among children with documented cerebral folate deficiency—and some findings suggest potential benefit in carefully selected cases. These preliminary results are promising and have laid the groundwork for further investigation.

However, the current evidence base remains too limited to support specific clinical recommendations. Key questions about who may benefit, what dosing and monitoring are appropriate, and what the long-term safety profile looks like have not yet been adequately answered. Larger, well-controlled clinical trials are needed to determine whether leucovorin is a safe and effective option for the broader autistic pediatric population.

The AAP supports research and innovation that improve the quality of life for autistic children and their families. We also recognize the need for any emerging guidance to be grounded in both scientific rigor and respect for neurodiversity.

Pediatricians and prescribing pediatric care providers, including other physicians, physician assistants, and nurse practitioners, are encouraged to engage in shared decision-making with families who inquire about or request leucovorin, providing clear information about current evidence and potential risks. Autistic children, adolescents, and young adults benefit from access to robust supports and services based on their individual needs. Pediatricians and other pediatric care providers should work with families to optimize recommended services and emphasize continuation of well-established supports and therapies that are beneficial to the well-being of the child. The AAP does not have prescribing guidelines for leucovorin for the indication of autism. If a pediatrician or other physician, physician assistant, or nurse practitioner prescribes leucovorin for a pediatric patient, they should prioritize harm mitigation, closely monitor for adverse effects, and support families in navigating complex therapeutic decisions grounded in compassion, transparency, and scientific integrity.

As the evidence base continues to evolve, the AAP remains committed to reviewing new data and updating this guidance accordingly. The AAP supports continued research into all promising therapies that may improve health and developmental outcomes for autistic children, adolescents, and young adults.