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Saturday, July 5, 2025

Bleachers

In The Politics of Autism, I discuss autism quackery.  There have been lots of bogus "cures" over the years: chelationcamel milk, "magic dirt," and products containing bleach. They do not work and some are dangerous

Josie Ensor at The Times:
Ignoring health authority warnings around the ingesting of chlorine dioxide, alternative health influencers are recommending people drink it with water, spray it on skin and even use it in enemas as a “cure” for everything from measles to cancer, HIV and autism.
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Kennedy, who has built a huge following promoting anti-vaccine conspiracy theories, has not explicitly promoted chlorine dioxide as a treatment. But during his Senate confirmation hearing in January, he referred to the chemical substance and praised Trump for “looking at all of the different remedies” for Covid, “including even chlorine dioxide”.

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In recent months, interest has exploded among social media groups such as those called “Chlorine Dioxide” and “Secret Mineral”, some of which have added thousands of new followers on Facebook from the US, UK and across the world.

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In May, the movement was given its first mainstream boost when [Andreas] Kalcker was invited to a “Truth Seekers” conference at the Trump National Doral hotel in Miami, a two-day event featuring anti-vaxxers and conspiracy theorists.

Though the conference was a closed event, The Times found video and photographs posted on the social media accounts of attendees. A number of products appeared to be on sale to ticket-holders, including chlorine dioxide-based nasal sprays sold by Michelle Herman.

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The American Association of Poison Control Centers recorded more than 16,000 cases of chlorine dioxide poisoning, including 2,500 cases of children under 12, in 2020, the last year it published figures on the trend. Many of those individuals suffered serious side-effects, the group noted, including a six-year-old autistic girl who required hospital treatment for liver failure.

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Emma Dalmayne, an autism campaigner who has several autistic children and was diagnosed herself, said giving any legitimacy to bleach cures was dangerous. “It’s one thing if a consenting adult decides to take this, but we are seeing children held down and given enemas,” she told The Times. “Sometimes drops are put into their babies’ bottles.”

Dalmayne said her advocacy has attracted hate mail, threats and even bullets through the post, believed to be sent by members of the bleacher community trying to “silence” her.

Friday, July 4, 2025

Dr. Hotez v. Vaccine Misinformation

 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 measlesCOVID, flu, and polio.

 At TNR, Melody Schreiber writes of RFK Jr.:

“It’s hard to know how this is all going to play out. But right now, everything appears very dark,” said Peter Hotez, dean for the National School of Tropical Medicine at Baylor College of Medicine. And yet, he added, “I don’t think we’ve hit bottom. I think he’s continuing to chip away, with some pretty big chips, to erode our vaccine ecosystem. I don’t see a turnaround at this point. We’re still in free fall as far as I’m concerned.”

Thursday, July 3, 2025

Work Reporting Requirements


Bram Sable-Smith at KFF:
Republicans have touted Medicaid work requirements both as a way to reduce federal spending on the program and as a moral imperative for Americans.

“Go out there. Do entry-level jobs. Get into the workforce. Prove that you matter. Get agency into your own life,” Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said in a recent interview on Fox Business.

Democrats, meanwhile, have cast the requirements as bureaucratic red tape that won’t meaningfully increase employment but will cause eligible people to lose their health insurance because of administrative hurdles.

Indeed, the vast majority of Americans enrolled in Medicaid expansion are already working, caregiving, attending school, or have a disability, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

And while the Congressional Budget Office estimates the work requirement included in the House bill would cause 4.8 million Americans to lose their insurance, only about 300,000 of those people are unemployed because of lack of interest in working, according to the Urban Institute, a nonprofit research group. Recent history in states that have tried work requirements suggests technical and paperwork problems have caused a substantial portion of coverage losses.

Kim Gallagher had to give up guardianship of her son so she could receive pay for being his caregiver.

Gallagher worries about her coverage, because she recently was diagnosed with Hashimoto’s disease, an autoimmune disorder that attacks the thyroid gland. She said she had to search for her Medicaid card to fill the prescription that followed, having barely used it in the year in a half she’s been covered.

She also worries about her son’s Medicaid. A nursing home is not a realistic option, considering his needs. His coverage doubles as Gallagher’s only source of income and also pays for other caregivers, when she can find them, who give her breaks to tend to her own health and to her aging parents.

But nearly all in-home services like those Daniel receives are optional programs that states are not required to include in their Medicaid programs. And the magnitude of the cuts being proposed have prompted fears that the optional programs could be chopped.

“It would destroy our lives,” Gallagher said. “The only income we would have would be Daniel’s Social Security.”

Wednesday, July 2, 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 importantCongress is about to slash Medicaid.

Margot Sanger-Katz and Emily Badger at NYT:

Instead of explicitly reducing benefits, Republicans would make them harder to get and to keep. The effect, analysts say, is the same, with millions fewer Americans receiving assistance. By including dozens of changes to dates, deadlines, document requirements and rules, Republicans have turned paperwork into one of the bill’s crucial policy-making tools, yielding hundreds of billions of dollars in savings to help offset their signature tax cuts.

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Decades of evidence show that administrative barriers prevent vulnerable families from receiving benefits, while simplifying programs can increase use. In the first Trump administration, more frequent Medicaid eligibility checks led to losses in health coverage for more than a million poor children. Studies of student aid applications have shown that programs that help families fill out the forms boost college participation.

At the same time, there is no evidence that work requirements in food or health care programs actually cause more people to work — a consistent finding that the budget office folds into its estimates of the policy’s savings.

“Study after study after study, year after year after year have pointed out we really need to call them work reporting requirements, not work requirements,” said Heather Hahn, an associate vice president in the family and financial well-being division at the Urban Institute.

 The American Association of People with Disabilities:

The American Association of People with Disabilities (AAPD) strongly condemns the budget reconciliation bill passed by the Senate, which includes an alarming $930 billion in cuts to Medicaid. These proposed cuts are even more severe than those passed by the House of Representatives and represent a direct threat to the health, independence, and lives of millions of Americans with disabilities.

Medicaid is a lifeline for people with disabilities. It provides essential services such as home and community-based services, employment supports, and critical medical treatments that enable individuals to live independently, participate in their communities, and maintain their well-being. The deep cuts proposed in this Senate bill would dismantle these vital supports, forcing many people with disabilities into institutions, limiting access to necessary medical care, and ultimately jeopardizing their ability to live full and meaningful lives.

The bill also includes stricter work requirements for the Supplemental Nutrition Assistance Program (SNAP), which helps millions of people with disabilities, older adults, and their families buy food each month. Furthermore, it goes beyond proposing SNAP cuts and also shifts the cost onto states, which would significantly impact their budgets and hit rural communities the hardest.

“The Senate’s budget reconciliation bill is a cruel assault on disabled people and other marginalized communities,” said Maria Town, President and CEO of AAPD. “These unprecedented cuts to Medicaid and SNAP will not only strip away essential services but will also inflict immeasurable harm on individuals with disabilities, their families, and their communities, all under the deceitful guise of preventing waste, fraud, and abuse, which rarely occurs. Disabled people have fought cuts before, and we will not only continue to fight against cuts that slash our services and threaten our rights, we will fight for more investment in services so that disabled people have what we need to thrive,” Town continued.

“AAPD also extends its sincere gratitude to the Senators who, during the exhaustive 20-hour ‘vote-a-rama,’ offered crucial amendments to remove the bill’s cruelest provisions. This resulted in the removal of the harmful moratorium on state laws regulating the use of artificial intelligence and included proposed amendments to strip the bill of some of the worst of the Medicaid cuts, remove onerous work requirements, prevent bans on Medicaid coverage for gender-affirming and reproductive healthcare, and preserve vital food assistance. Their tireless work to mitigate the harm of this bill and make our government responsive to the daily needs of the American people is deeply appreciated,” Town concluded.

This fight is not over. The bill now returns to the House of Representatives for a vote on the Senate’s version. We are encouraged that some House members have already indicated their opposition to this harmful legislation. We urge all concerned citizens to contact their Representatives immediately and demand they vote NO on this destructive bill. The AAPD is firmly against any legislation that undermines the rights and well-being of people with disabilities. We call on Congress to protect Medicaid and ensure that people with disabilities have continued access to the services they need to thrive
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Tuesday, July 1, 2025

"Risk" and "Cause" Are Not the Same


Stephen Camarata at Psychology Today:
The truth is that finding a cause for autism is not that simple and will undoubtedly require more than a few months. The current state of the art in autism research indicates that there are a plethora of factors plausibly posited as “causes.”

For example, an extensive research literature highlights potential genetic contributions: A recent review concluded “The cause of autism seems to be multifactorial. Genetic mechanisms play a particularly large role as a cause of autism, and a substantial number of DNA studies have discovered a polygenic risk factor in autism[2].”

But a “risk” does not necessarily mean “cause.” A well-known example of this can be seen in cancer research. Evidently, herpes virus (HSV) is a highly significant risk factor for developing cervical cancer, and was once widely believed to be a “cause” of this form of cancer. But another virus, Human Papilloma Virus (HPV), is more directly implicated in cervical cancer to the extent that the US Centers for Disease Control now reports, “More than 9 of every 10 cases of cervical cancer are caused by HPV. Almost all cervical cancer can be prevented by HPV vaccination.”[4]

...

It may be instructive to bear in mind that families have been victimized by a whole series of proclamations on the "cause" of autism[9], ranging from "refrigerator moms" who withheld attention and attachment to their child to the Wakefield debacle wherein the measles, mumps, and rubella vaccine was touted as the cause. [10] Ultimately, the article promoting this cause was withdrawn from publication in disgrace.

Monday, June 30, 2025

Research on Profound Autism

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.

Sunday, June 29, 2025

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.

 

Saturday, June 28, 2025

Global Antivax


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.”

 

Friday, June 27, 2025

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 measlesCOVID, 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.”

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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.

 

 

Thursday, June 26, 2025

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 measlesCOVID, flu, and polio.

 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

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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.
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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.

Wednesday, June 25, 2025

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 measlesCOVID, flu, and polio.

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:


AOC:


Frank Pallone (D-NJ):


Tuesday, 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 importantCongress 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.

Monday, June 23, 2025

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.)