Research on Profound Autism

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Gabrielle M. Etzel at The Washington Examiner:

Judith Ursitti, president of the Profound Autism Alliance, told the Washington Examiner that ending genetic research on autism simply because of the risk that it could be used to justify selective abortion is to throw the baby out with the bathwater.

“What we have to do is focus on finding ways to prevent eugenics while we’re making progress,” said Ursitti. “It’s a tough situation, but humanity is capable of doing good things with powerful science.”

Ursitti, the mother of an autistic son with high support needs, said Kennedy’s description of people with severe disabilities “did not really respect the dignity of people with profound autism.” Still, she said, she supports the administration’s efforts to improve research on the causes of autism for the purposes of developing treatments for severe symptoms.

PAA has been instrumental in advocating the term “profound autism” and establishing more standardized research criteria. PAA’s definition of profound autism requires that an individual needs 24/7 care from an adult their entire life, has minimal or no language ability, has an IQ below 50, or a combination of all three criteria.

The CDC found in 2023 that roughly 27% of children diagnosed with autism fit the PAA’s criteria for profound autism. PAA’s research has found that individuals with profound autism are only included in 6% of the clinical research on the disorder.

“There is, in our world, a lot of suffering,” said Ursitti. “There’s death, there’s really horrific self-injury. And again, we value human beings that have profound autism. We love them. We want them to contribute to the world. But the suffering has kind of been pushed to the side a little bit.”

Ursitti highlighted that there are no pharmaceutical options on the market for autism-related aggression or depression symptoms, but understanding the etiology of autism could result in autism-specific pharmaceuticals or therapies.

Implementation and Autism Intervention Research

In The Politics of Autism, I examine the implementation of public policy regarding autism at the federal, state, and local levels, encompassing education and social services.  Implementation needs far more study.

Lee, J. D., Terol, A. K., Tschida, J. E., Pomales-Ramos, A., McEathron, S., Wallisch, A., & A Boyd, B. (2025). Examining the use of implementation science in autism intervention research: A scoping review. Autism, 0(0). https://doi.org/10.1177/13623613251351344

Lay abstract:

This study looks at ways to improve how autism support programs are used in everyday community settings like schools and clinics. These programs are approaches that research has shown can help autistic individuals develop important skills, such as communication, social interaction, and managing behavior. Many of these are psychosocial programs, which means they focus on emotional, social, and behavioral support rather than medication or medical treatment. However, there is a challenge in implementing these interventions in real-world settings, especially in marginalized communities where services are often lacking or lower in quality. The field of implementation science helps bridge this gap by guiding and encouraging the use of evidence-based practices in community settings, aiming to reduce disparities. To better understand this, we did a scoping review that included 13 studies that used implementation science to support autism interventions. We looked at what types of strategies were used, how success was measured, and how well the programs fit into the communities where they were used. Most of the studies took place in schools and involved teachers, school staff, or caregivers of autistic children—altogether including data from 3488 participants. These studies tested different programs to improve outcomes of autistic individuals, such as social skills, communication, and behavior in schools.

From the article:

While school is a place where most autistic children receive services, these findings indicate the need for more efforts focused on examining various implementation phases across different settings to meet diverse needs of autistic children. Other community-based settings, such as daycare, clinics, therapy centers, recreational programs, vocational programs, and faith-based organizations, also provide services to autistic individuals, and it is therefore important to examine how EBPs may be delivered in such settings. These settings may have different structural and operational dynamics compared to schools, which may affect how EBPs are implemented. For example, community-based mental health clinics serving autistic individuals may have different resource constraints or other competing priorities compared to schools (Brookman-Frazee et al., 2010). Therefore, it is imperative to first carefully examine unique determinants (e.g. barriers, facilitators) that exist in different settings and carefully select implementation strategies that map onto these determinants (Balis & Houghtaling, 2023; Wensing & Grol, 2019). Using this intentional and careful process will allow us to avoid the pitfalls such as relying on a “one-size-fits-all” approach or choosing strategies that have little association with the identified determinants (Squires et al., 2014). Thus, it is important to not only recognize these determinants but also understand how these determinants would influence the appropriateness of implementation strategies within a specific context (Wensing & Grol, 2019). Moreover, the current political uncertainties in the United States have introduced increasing threats to publicly funded services, including special education and disability supports, which may disproportionately affect autistic individuals and their families. In this context, implementation research plays a critical role not only in bridging the research-to-practice gap but also in ensuring that effective, equitable, and sustainable interventions are embedded into systems of care, especially during times of policy uncertainty and resource instability.

 

Global Antivax

 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 number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

Hana Kiros at The Atlantic:

This week, Robert F. Kennedy Jr. used his address to a global vaccine summit to disparage global vaccination. The conference was organized by Gavi, the world’s leading immunization program, and in a recorded speech, Kennedy accused the organization of collaborating with social-media companies to stifle dissenting views on immunization during the coronavirus pandemic and said it had “ignored the science” in its work. He criticized Gavi for recommending COVID-19 shots to pregnant women, and went deep on a discredited study that purported to find safety issues with a tetanus vaccine commonly used in the developing world. “In its zeal to promote universal vaccination,” Kennedy claimed, Gavi “has neglected the key issue of vaccine safety.”

Kennedy’s remarks confirmed what The New York Times first reported in March: that the United States, Gavi’s third-largest donor, would stop pledging money to the organization. (Congress, which has always had final say over Gavi funding, has not yet weighed in.) They are also the first indication that the U.S.’s rejection of global vaccine campaigns stems from the Trump administration’s opposition not only to foreign aid, but to vaccination itself. For the first time, Kennedy has managed to use the anti-vaccine agenda to guide American foreign policy.

Gavi, at its most basic level, is Costco for immunizations, wielding its massive purchasing power to buy vaccines in bulk for cheap. National governments and private philanthropies pledge funding to it every five years. The United Kingdom and the Gates Foundation are its largest donors; the United Nations distributes the shots. The poorest countries pay 20 cents per vaccine, and prices rise along with national income. Since the partnership was launched, in January 2000, 19 countries—including Ukraine, Congo, and Guyana—have gone from relying on Gavi to paying for vaccinations entirely on their own. Indonesia, which accepted donations from Gavi as recently as 2017, pledged $30 million to the organization this funding cycle.

Gavi, by its own estimate, has saved about 19 million lives and vaccinated 1 billion children. At the conference this week, the director of the World Health Organization noted that since 2000, the number of children who die each year before they reach the age of 5 has fallen by more than half, largely due to the power of vaccines. By Gavi’s estimates, the U.S. canceling its Biden-era pledge to provide $1.2 billion this donation cycle could lead to the deaths of more than 1 million children who otherwise would have lived. (The Department of Health and Human Services did not respond to a request for comment.) In his recorded remarks, Kennedy said America would not send the money until Gavi can “re-earn the public trust” by “taking vaccine safety seriously.”

 

ACIP and Thimerosal

 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.

Lia DeGroot at Roll Call:

A key vaccine policy advisory group is recommending that the public not receive vaccines that have thimerosal, a mercury-containing preservative that’s used to prevent germs, fungus and bacteria from building up in vials.

While thimerosal isn’t common, the debate over its use at the federal public health level is seen as emblematic of the concerns of health experts, who fear that policies under Health and Human Services Secretary Robert F. Kennedy Jr. will chip away at evidence-based science.

The Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices, comprised of entirely new members appointed by Kennedy, voted Thursday to make the recommendation. The topic appearing on the meeting agenda at all came as a surprise to many in public health and clinician communities. The CDC itself says it’s been long established that there is no evidence that the amount of thimerosal included in some flu vaccines is harmful.

Thimerosal is used in multidose flu vaccine vials to prevent contamination when the second dose is pulled, according to the Food and Drug Administration. The amount of mercury in vials is about equal to the amount of mercury contained in a three-ounce can of tuna, the FDA says.

Vaccine skeptics have promoted the idea that it’s linked to autism and ADHD. Kennedy was editor of a 2014 book titled “Thimerosal: Let the Science Speak,” which called for the removal of the substance from vaccines.

Sheryl Gay Stolberg at NYT:

Critics say that in resurrecting an old controversy, Mr. Kennedy could brew mistrust rather than ease it. Numerous studies, including a 2004 report by the Institute of Medicine and a 2010 review of the medical literature, have rejected a link between the preservative and autism. Dr. Oz, who now runs the Centers for Medicare and Medicaid Services, noted on his 2014 show that any link had been “ultimately discredited.”

...

Dr. Paul Offit, a vaccine expert at Children’s Hospital of Philadelphia who served on the advisory committee from 1998 to 2003, remembers Ms. Redwood protesting the C.D.C. at that time, when health experts were originally debating thimerosal’s risks. He objected to an advocate making a scientific presentation to the advisory committee.

“It wasn’t clear to me that she was saying autism anymore, like she did 25 years ago,” he said of her presentation Thursday, adding, “It’s like Whac-a-Mole. They just keep moving onto the next thing.”

Ordinarily, such a presentation would be preceded by an analysis from C.D.C. experts. But the panel on Thursday did not hear from the C.D.C. The agency posted a document on the advisory committee’s website on Tuesday that concluded “the evidence does not support an association” between the preservative and autism or other neurodevelopmental disorders.

But the document was taken down the next day. A spokesman for Mr. Kennedy, Andrew Nixon, said that it had not gone through the proper vetting, but that committee members had been given copies of the document.

 

 

RFK Jr. and Thimerosal

 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 number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

 Teddy Rosenbluth at NYT:

For decades, anti-vaccine groups have targeted thimerosal, a vaccine preservative that they claim, without credible evidence, is linked to autism and other neurodevelopmental disorders.

These claims about the mercury-based preservative have long existed at the fringes — until now.

Under the leadership of the health secretary, Robert F. Kennedy — who wrote a book supporting “the immediate removal of mercury” from vaccines — these claims are now to be seriously considered by newly appointed members of the Advisory Committee on Immunization Practices, an influential group that makes vaccine recommendations to the Centers for Disease Control and Prevention.

On Thursday, the panel is expected to discuss and vote on the use of thimerosal in flu vaccines, the only routine shots that still include

... 

the additive. Instead of a C.D.C. scientist presenting on the subject, as is custom, Lyn Redwood, the former leader of a prominent anti-vaccine group, will speak to the committee.

Slides from that presentation, which were posted online ahead of the meeting, argue thimerosal is “neurotoxic” and harmful for pregnant women and children — claims that are contradicted by dozens of rigorous studies and have largely been rejected by vaccine scientists.

AT ABC, Will McDuffie and Dr. Jade Cobern report:

"To the best of my knowledge, the study in rats referred to in the planned CDC presentation by Lyn Redwood listing Berman RF as first author does not exist," Robert F Berman, Ph.D., professor emeritus at the University of California Davis, said.

"I have not published a paper with that title or with that set of co-authors in the journal Neurotoxicology in 2008. Also, none of my research has made any statements about possible thimerosal effects on microglia in the brain or resulting in neuroimmune effects," Berman said.

That citation has since been removed from the revised presentation online.
...

At least one vaccine expert said she shuddered Wednesday at the idea of Redwood joining HHS.

Fiona Havers, a 13-year CDC veteran who worked on vaccine policy, told ABC News in a statement, “Lyn Redwood is well-known for spreading vaccine misinformation. It is troubling that Redwood may now have an official role within HHS and will potentially be in a position to interfere with official messaging about vaccine safety.”

ABC News has reached out to Redwood for a comment.

Redwood and Kennedy have long been close. In a conversation between the two of them on Kennedy’s podcast last year, Kennedy credited Redwood with being the figure who “coordinated” the “stalking crusade” by mothers who convinced Kennedy to begin looking into the potential harms of vaccines in the early 2000s.

RFK's Bad Day

 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 number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS.  At a hearing of the House Energy and Commerce Subcommittee on Health , three members eviscerated him.

Rep. Kim Schreier (D-WA) -- a pediatrician:

Take 5 minutes to watch @DrKimSchrier give a masterclass on how to use your committee time. 👇 pic.twitter.com/Ss17jl2F5b

— Rachel Bitecofer 🗽🦆 (@RachelBitecofer) June 24, 2025

AOC:

AOC: Are you aware that President Trump's DOJ is investigating United Health Care for criminal insurance fraud?

RFK JR: I am not aware of that investigation

AOC: You are not aware that the Trump DOJ is investigating the largest insurance company in America for fraud in Medicare… pic.twitter.com/HGbd3iSIMf

— Aaron Rupar (@atrupar) June 24, 2025

Frank Pallone (D-NJ):

PALLONE: With regard to vaccines, are you just afraid to receive public comments on proposals? There's been no public process

RFK JR: We have a public process for regulating vaccines. It's called the ACIP committee.

PALLONE: You fired the committee! pic.twitter.com/H3gvQWV0jL

— Aaron Rupar (@atrupar) June 24, 2025

Medicaid Cuts

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. Congress is about to slash Medicaid spending.

Dr. Zachary Rossetti at The Fulcrum:

To understand the devastating impact of these Medicaid cuts on people with IDD, including those with autism, it’s crucial to recognize the distinction between mandatory and non-mandatory Medicaid services.

Mandatory services, which are required by law, consist of healthcare services like doctor visits, medical care in hospitals, and long-term services and supports that are provided in nursing homes or institutions. Non-mandatory services, which are optional and vary by state, consist of dental care, some therapies, and most home- and community-based services (HCBS) provided through Medicaid waiver programs.

Many non-mandatory services are lifelines to individuals with IDD and autism to remain in their communities, allowing them to live safely and with dignity in their own homes and to engage meaningfully in lives of their choosing. Although they are labeled “non-mandatory,” these supports are absolutely critical for people with IDD and their families. Yet, because they are optional, non-mandatory services are most likely to be affected by any cuts to Medicaid. Mandatory services, meanwhile, are required by law and thus less likely to be affected by cuts to Medicaid. As a result, families may have no other options besides institutional care.

Additionally, many individuals with IDD and autism gained access to healthcare through the Affordable Care Act’s option for states to expand Medicaid coverage. But proposed cuts to Medicaid in the reconciliation bill would be more likely to affect those with Medicaid expansion coverage because the federal government covers 90% of costs for Medicaid expansion compared to 50% for traditional Medicaid. This would hit especially hard in states like Massachusetts where long waitlists already limit access to home- and community-based care.

Nationally, the best available data indicate over 700,000 people across 38 states are on waiting lists for home- and community-based care. Any cuts to Medicaid would mean that even fewer people with IDD and autism receive the services they need.

The DSM and Prevalence

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

 Dr. Allen Frances, the lead editor of previous version of the manual, says that the diagnostic instructions are confusing, so the diagnosis will vary from rater to rater and place to place. “It will be even more impossible than it is now to determine rates of autism and why they shift so much over time.”   A more recent study says that prevalence estimates are likely to decline under DSM-5 – but it cautions that policies for service eligibility and diagnostic tools will change in response to the revised criteria. Clinicians may react by looking for more symptoms to back up ASD diagnoses.

And DSM-5 is not the last word.  Whereas the titles of previous editions included Roman numerals (DSM-III, DSM-IV), the new one instead has an Arabic numeral to make it easier to designate revisions. The future will bring DSM-5.1, DSM-5.2, and so on, which may include further changes in the way we describe and diagnose autism.

 Allen Frances at NYT:

The rapid rise in autism cases is not because of vaccines or environmental toxins, but rather is the result of changes in the way that autism is defined and assessed — changes that I helped put into place.

In the late 1980s and early 1990s, I chaired the task force charged with creating the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, or the D.S.M.-IV. Sometimes called the “bible of psychiatry,” the D.S.M. influences medical practice, insurance coverage, education and treatment selection.

In the third edition of the D.S.M., published in 1980, autism was tightly defined and considered extremely rare. Criteria for the diagnosis required a very early onset (before age 3) of severe cognitive, interpersonal, emotional and behavioral problems.

But my task force approved the inclusion of the new diagnosis, Asperger’s disorder, which is much milder in severity than classic autism and much more common. In doing so, we were responding to child psychiatrists’ and pediatricians’ concerns for children who did not meet the extremely stringent criteria for classic autism, but had similar symptoms in milder form and might benefit from services.

Based on careful studies, our task force predicted that the addition of Asperger’s disorder would modestly increase the rate of children given an autism-related diagnosis. Instead, the rate increased more than 16-fold, to one in 150 from an estimated one in 2,500 in the span of a decade. It has been climbing more gradually ever since and is one in 31 today. Our intentions were good, but we underestimated the enormous unintended consequences of adding the new diagnosis.

The resulting explosion in cases included many instances of overdiagnosis — children were labeled with a serious condition for challenges that would better be viewed as a variation of normal. It also sowed the seeds of conspiracy theories and anti-vaccine beliefs as people wondered how to explain the rising cases.

Many large studies have come to the same conclusion: Vaccines don’t cause autism. The role, if any, of environmental toxins is still to be determined, but there is no known environmental factor that can explain the sudden jump in diagnoses. The changes we made to the diagnosis in the D.S.M.-IV can.

Why did autism-related diagnoses explode so far beyond what our task force had predicted? Two reasons. First, many school systems provide much more intensive services to children with the diagnosis of autism. While these services are extremely important for many children, whenever having a diagnosis carries a benefit, it will be overused. Second, overdiagnosis can happen whenever there’s a blurry line between normal behavior and disorder, or when symptoms overlap with other conditions. Classic severe autism had so tight a definition it was hard to confuse it with anything else; Asperger’s was easily confused with other mental disorders or with normal social avoidance and eccentricity. (We also, regrettably, named the condition after Hans Asperger, one of the first people to describe it, not realizing until later that he had collaborated with the Nazis.)

Again with Thimerosal

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 number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

 A June 18 post at Inside Medicine by Jeremy Faust:

The CDC’s newly installed panel of voting members for its Advisory Committee on Immunization Practices will vote on “Thimerosal containing influenza vaccine recommendations.” The eight-member panel (hand-picked by HHS Secretary Robert F. Kennedy Jr. after he sacked the seventeen incumbent experts with minimal explanation) includes individuals who have been paid experts in lawsuits against vaccine manufacturers and spread lies about vaccine safety.

The agenda item was posted on the CDC’s website this morning.

The anti-vaccine movement has long tried to blame autism on vaccines containing thimerosal. The link has been debunked many times.

The vote will follow a presentation on thimerosal in vaccines and proposed recommendations regarding thimerosal-containing influenza. Who will be presenting is “TBD.”

Thimerosal has long been an obsession of the anti-vaccine movement. While the CDC’s website (as of today, at least) says, “a robust body of peer-reviewed scientific studies conducted in the U.S. and other countries support the safety of thimerosal-containing vaccines,” most vaccines do not contain them.

...

Former ACIP member Dr. Paul Offit reacted strongly when I informed him of the news, saying: “RFK Jr has now stocked ACIP with like-minded individuals. He’s now created something where we are going to simply have to decide, as a nation, how much pain are we willing to take before someone asks this guy to step down? His goal is simple: Make vaccines less available, less affordable, and more feared. When do we step forward? Who will step forward? I do not believe Senator William Cassidy will do this. It’s going to come down to the public—to parents.”

RFK v. Privacy

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 number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

Emily Largent at MEDPAGETODAY:

Most recently, HHS announced the creation of "a real-world data platform" combining data  insurance claims, electronic medical records, and consumer wearables, and enabling research into the "root causes" of autism.

It is not just autistic people who should be worried by these developments.

If you have autistic patients or an autistic person in your family, you should worry. Research can harm people not directly involved in it and should be conducted with attention to minimizing such harms. For example, autism is thought to be caused by a combination of genetic and environmental factors. Given the strong role of genes, research into the root causes of autism -- or into related conditions like attention deficit-hyperactivity disorder (ADHD), depression, or learning disabilities -- could generate important insights while also revealing sensitive or stigmatizing information about research subjects' family members and other social groups. This concern is acute, as Kennedy's hurtful comments have already perpetuated stigma. Those affected by research should have a voice in what the research looks like.

If you are among the three-quarters of U.S. adults who report having one or more chronic conditions, you should worry. Autism is the first but not the last condition that will be studied using the real-world data platform. Longer term, HHS plans to study other chronic diseases. Autistic people  that it is not clear whether this research will be conducted with individuals' consent, and they have raised important concerns about data privacy.


Research into chronic conditions is needed, but for it to be ethical, questions of consent and privacy -- flagged by the autistic community but relevant to all research participants -- must be resolved. The obligation to protect participants always exists but the stakes are heightened given this administration's willingness to trample privacy norms, placing people at risk of identification and harm if their information is mishandled.

Autism in Russia

  In The Politics of Autism, I discuss international perspectives.

Ayman Eckford at The Moscow Times:

One of the biggest issues in talking about autism in Russia is that it is extremely difficult for adults to be recognized as autistic.

Although Russia officially recognizes the World Health Organization’s norms and uses the ICD-10 medical standardization system (though not the updated ICD-11 codes). Instead, doctors often rely on outdated Soviet-era standards, where autism is equated with childhood schizophrenia, which means that autistic people automatically have their diagnosis changed when they turn 18.

This results in autistic adults not only being denied support and recognition but also facing an increased risk of forced institutionalization. In Russia, there are many jobs you cannot get if you are diagnosed with schizophrenia, and the social stigma is extremely severe.

And this automatic diagnosis change is not just a relic of the Soviet past — it remains alive in medical education. In 2015, I spoke to a medical student at one of Saint Petersburg’s top universities. He told me that, according to his curriculum, distinguishing autism from schizophrenia is extremely difficult.

There is a deeper ideological reason for this.

The stereotype of autism as a form of schizophrenia is not just medical incompetence. It is not a political myth, rooted deeply in Russian history.

During the Soviet era, many political dissidents were forcibly hospitalized and given diagnoses like schizophrenia or sluggish schizophrenia. The latter was a fictional disorder created by Soviet psychiatrists after World War II.

Antivaxxer on Vaccine Panel

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 number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. He lies about autism research.

Aria Bendix, Brandy Zadrozny and Polly DeFrank at NBC:

The eight new members Kennedy appointed to the Advisory Committee on Immunization Practices (ACIP), which makes recommendations to the Centers for Disease Control and Prevention about who should get certain vaccines, include three people who have testified as expert witnesses against vaccine makers, NBC News found in a review of the members’ professional backgrounds.

Vicky Pebsworth is the most problematic:

[She] has worked for anti-vaccine groups for about 20 years. Pebsworth, a registered nurse with a doctorate in public health and nursing from the University of Michigan, is a board member and the volunteer director of research and public safety for the National Vaccine Information Center, which researchers consider a leading source of misinformation about vaccines. She has been a consumer representative on several federal vaccine panels and working groups.

In bios and conference speeches, Pebsworth says her activism was sparked by her only child’s autism diagnosis, which she attributes to vaccines he received at his 15-month well-baby visit. She became a prominent voice for the debunked claim that thimerosal — a preservative removed from childhood vaccines in 2001 — triggers conditions like autism.

She also was an expert witness in a failed federal lawsuit brought by activists who sought to outlaw childhood vaccination mandates, claiming they prevented meaningful safety comparisons between vaccinated and unvaccinated children — a view espoused by Kennedy. A judge dismissed the case in 2021 for lack of standing.

IDF and Autism

In The Politics of Autism, I discuss military personnel and military families.  The IDF recruits autistic soldiers.  The US military is lagging.

Hana Levi Julian at JewishPress.com:

The Israel Defense Forces (IDF) is implementing significant changes to its recruitment and integration strategies for individuals on the autism spectrum, according to Udi Heller, an autistic IDF officer and founder of the “Titkadmu” (“Move Forward”) program, and the “Shavim” association, which works to provide vocational rehabilitation for the disabled.

The reforms aim to address manpower shortages and diversify service options for autistic individuals.

The move will see changes to “Move Forward”, with the IDF shifting toward recruiting some autistic personnel through standard channels, with possible integration into operational units.

Previously, young people on the autism spectrum could volunteer for service with medical profiles of 25 or higher, primarily in predefined roles, or enlist via the specialized “Move Forward” program, which allowed them to serve under Profile 45 with accommodations that suited their needs.

According to a document from the IDF’s “Meitav” Command, new policies permit certain autistic individuals to be recruited under Profile 64 without adjustments, enabling placements in combat support units or even combat units, aligning with the IDF’s war-driven recruitment needs.

Bill Cassidy, Failure

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 number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. He lies about autism research.

At The Atlantic, Nicholar Florko writes about Sen. Bill Cassidy (R-LA):

In the speech he gave on the Senate floor explaining his decision, Cassidy said that he’d vote to confirm Kennedy only because he had extracted a number of concessions from the nominee—chief among them that he would preserve, “without changes,” the very CDC committee Kennedy overhauled this week. Since then, Cassidy has continued to give Kennedy the benefit of the doubt. On Monday, after Kennedy dismissed all 17 members of the vaccine advisory committee, Cassidy posted on X that he was working with Kennedy to prevent the open roles from being filled with “people who know nothing about vaccines except suspicion.”

The senator has failed, undeniably and spectacularly. One new appointee, Robert Malone, has repeatedly spread misinformation (or what he prefers to call “scientific dissent”) about vaccines. Another appointee, Vicky Pebsworth, is on the board of an anti-vax nonprofit, the National Vaccine Information Center. Cassidy may keep insisting that he is doing all he can to stand up for vaccines. But he already had his big chance to do so, and he blew it. Now, with the rest of America, he’s watching the nation’s vaccine future take a nosedive