Project 2025 Author Goes to the Education Department

In The Politics of Autism, I write about social services, special education and the Individuals with Disabilities Education Act. 

Katherine Knott at Inside Higher Ed:

An influential conservative policy expert who has advocated for closing down the Education Department is joining the agency.

The Trump administration announced Friday that Lindsey Burke, the director of the Center for Education Policy at the Heritage Foundation, will be the department’s deputy chief of staff for policy and programs. Burke also authored the Education Department chapter of Project 2025, a conservative policy blueprint that called for sweeping changes to higher education policy, from privatizing student loans to rolling back LGBTQ+ protections in Title IX.

Project 2025 proposes to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon.

About Self-Diagnosis

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence.   Self-diagnosis is cotnroversial,  but may be helpful in explaining age differences.

Sol Smith at Psychology Today:

Even though studies have shown one-to-one correlations between self-identified autistics and professionally diagnosed autistics when it comes to symptomology, stigma, employment history, and social challenges (McDonald, 2020), these gatekeepers stand strong at their self-appointed posts, letting no one in without their personal permission.

The truth of the matter is that we know that those who are self-diagnosing are more educated on the subject of autism than those who are not; we know that those who are self-diagnosing are struggling in all the same ways as those who have been diagnosed; and we also know that autism is severely underdiagnosed, despite what the colloquial skeptic ferociously types in the comment section. The barriers to diagnoses are many, but in one study (Lewis, 2017), the single biggest barrier cited by autistic individuals is the fear of not being believed.

Shifts and awakenings happen. Cultural awareness expands. What appears to be a trend to the casual social media user is actually a wealth of answers, a source of empathy, and a toolkit for self-understanding to a hidden, marginalized population in desperate need of a little compassion.

Lewis, L. (2017). A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults. Journal of Autism & Developmental Disorders, 47(8), 2410–2424. https://doi.org/10.1007/s10803-017-3168-3


McDonald, T. A. M. (2020). Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale (ASIS) and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum. Autism in Adulthood : Challenges and Management, 2(1), 13–23. https://doi.org/10.1089/aut.2019.0069

Musk and Autism

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including casual prejudice against disabled people.  

Trump has a long history of using the r-word, and Lordy, there are tapes.

Elon Musk has said that he is autistic, so it is odd that he uses the word, a term that bigots throw against autistic people.

Julia Metreaux at Mother Jones:

In September, Elon Musk amplified a post from Autism Capital—a pro-Trump X account that he often reposts—that read: “Only high T alpha males and aneurotypical people (hey autists!) are actually free to parse new information with an objective ‘is this true?’ filter. This is why a Republic of high status males is best for decision making. Democratic, but a democracy only for those who are free to think.” Musk called the claim, which originated on the infamous web forum 4chan, an “interesting observation.” His repost was viewed 20 million times.

...

A society with too much empathy—the kind of society Musk claims we live in—wouldn’t be full of ostracized, bullied kids who grow into adults like him. A society that supported, or at least more thoughtfully approached, autistic traits wouldn’t produce 4chan boards full of his Aspie supremacist fans. It would allow people like Musk to speak openly about being autistic, without retreating from the word, and to engage with initiatives led by autistic people, not figures like Health and Human Services Secretary Robert F. Kennedy Jr. who describe autism as an “injury” that renders people incapable of holding jobs, making art, or playing sports.

Aspie supremacists do real harm to autistic people in their embrace of gendered, racialized stereotypes, and in drawing spurious lines between themselves and anyone they consider “severely” autistic. Musk may simply be a jerk, but he’s a jerk with a tremendous platform—and one whose fans loudly, publicly connect his shitty personal behavior and fascistic policies to “mild” autism.

“It’s really frustrating to be caught in this place where we’re trying to be inclusive of all autistic people, and there are such polarizing opinions and perspectives about autism,” says Jules Edwards. “It causes this additional challenge when we’re advocating for inclusion and access, trying to educate people about what is autism versus the idea of ‘good autism’ or ‘bad autism.’”

Geier's Monkey Business

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 presidential candidate 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. 

Liz Essley Whyte and Dominique Mosbergen at WSJ:

An antivaccine activist recently hired by Health Secretary Robert F. Kennedy Jr. has started hunting for proof that federal officials hid evidence that inoculations cause autism, according to people familiar with the matter.

David Geier, a longtime vaccine opponent hired this spring as a contractor in the health department’s financial office, is seeking Centers for Disease Control and Prevention data that antivaccine activists, including Kennedy, have alleged was buried because it showed a link between vaccines and autism, the people said.

...

Geier is seeking access to a database known as the Vaccine Safety Datalink, or VSD, which Kennedy referenced in his 2005 Rolling Stone article. But before joining HHS, Geier was barred at least twice from using the database because officials said he had misused it.
...

The health secretary has said Geier isn’t managing autism research but that he would look into whether data is missing from the database. “There has been a lot of monkey business with the VSD,” Kennedy told lawmakers last month.

Children’s Health Defense, the antivaccine nonprofit Kennedy once led, will host an online event Friday marking the 25th anniversary of what they call the “autism coverup.” Kennedy was slated to speak, according to an earlier version of a schedule posted online. His name was later removed.

...

In 2004, Geier and his father were prohibited from accessing the VSD after CDC officials determined they had misrepresented what they were going to do with the data. The CDC kicked the Geiers out of the VSD again in 2006.

Geier, at a 2015 conference, lamented that his access to the VSD had been suspended. “They think that that is been completely debunked and the science that we’re doing is no good,” he said.

NIH researchers have been asked to help Geier, people familiar with the matter said. NIH employees recently requested that the CDC send over the entirety of the VSD—an ask that set off alarm bells at the CDC and among researchers at the healthcare networks, who worried whether their patients’ private health information

Special Ed and Religious Schools in California

In The Politics of Autism, I write about social services, special education, and the Individuals with Disabilities Education Act. 

Atkinson, Andelson, Loya, Ruud & Romo

On May 19, 2025, in response to a Ninth Circuit decision, the California Department of Education (“CDE”) and the Los Angeles Unified School District agreed to permanent injunctions stating that they will no longer enforce the “nonsectarian requirement” set forth in the California Education Code for certification of nonpublic schools. This agreement means that the CDE will no longer require private entities to be “nonsectarian” to receive certification as a nonpublic school for placements of students with exceptional needs. Students with an Individualized Education Plan (“IEP”) may be directly placed in both religious and nonreligious private schools certified by the CDE as a nonpublic school at the school district’s expense.

This agreement follows the Ninth Circuit Court’s October 2024 decision in Loffman v. California Department of Education (2024) 119 F.4th 1147, in which two Orthodox Jewish schools and three Orthodox Jewish families challenged the nonsectarian requirement. The Plaintiffs in Loffman claimed that the nonsectarian requirement violated the Free Exercise Clause of the First Amendment to the United States Constitution. The United States District Court for the Central District of California dismissed the complaint. The Ninth Circuit reversed the dismissal and remanded the matter to the district court, but CDE chose to enter into an agreement with Plaintiffs instead of pursuing the case further.

In Loffman, the Plaintiffs argued, and the Ninth Circuit agreed, that they were being forced to choose between receiving the full benefits they were entitled to under the IDEA and their choice of education in an Orthodox Jewish setting. In its decision, the Ninth Circuit stated that nonsectarian requirement was not a neutral or generally applicable policy, because it singled out religious entities for different treatment. By placing burdens on sincere religious practice in this way, the policy was subject to strict scrutiny review, and could only be upheld if determined to be “narrowly tailored” to serve a compelling governmental interest.

The Ninth Circuit noted that the IDEA, a federal law, contemplates private placement at public expense in religious institutions, though any services provided with public funds must be “secular, neutral, and nonideological.” In contrast, the California Education Code is more restrictive than the federal law and required that private placement be in a nonsectarian institution to receive public funds. Because the federal law was less restrictive than California’s policy, the Ninth Circuit held that CDE failed to show that the nonsectarian requirement was narrowly tailored. In reaching the settlement referenced above, the CDE chose not to appeal the Ninth Circuit decision to the US Supreme Court, and stated that the Education Code requirement that nonpublic schools be nonsectarian was unconstitutional and would not be enforced.

The decision in Loffman was based in part on a series of U.S. Supreme Court decisions concerning the Free Exercise Clause, which support the principle that placing a condition on benefits or privileges based on religious affiliation penalizes the free exercise of religion. (Carson v. Makin (2022) 596 U.S. 767; Espinoza v. Mont. Dep’t of Rev. (2020) 591 U.S. 464; Trinity Lutheran Church of Columbia, Inc. v. Comer (2017) 582 U.S. 449.) However, Loffman stands in contrast with the U.S. Supreme Court’s May 22, 2025 ruling in Oklahoma Statewide Charter School Board v. Drummond, which also addressed questions raised by this series of cases.

In Drummond, the Court affirmed the lower ruling of the Oklahoma Supreme Court, which prohibited Oklahoma’s Charter School Board from entering a contract that would have used public funds to establish St. Isidore, a Catholic school, as part of the State’s public charter program. The U.S. Supreme Court was split 4-4 in issuing its decision, with Justice Barrett recusing herself. Therefore, it does not constitute nationwide binding precedent. The Court did not provide an opinion explaining its decision, and the decision was issued per curiam, without revealing how each Justice voted. That said, some of the reasoning behind the decision may be drawn from the Oklahoma Supreme Court’s ruling and the oral arguments before the U.S. Supreme Court.

In Loffman, the Ninth Circuit agreed with Plaintiffs’ argument that California’s nonsectarian requirement effectively forced the Plaintiffs to choose between receiving the full benefits they were entitled to under the IDEA and education in an Orthodox Jewish setting. In Drummond, the Oklahoma Supreme Court noted that St. Isidore was proposing that the State provide monetary support to teach a Catholic curriculum. The Oklahoma Supreme Court’s decision was based partly on the fact that St. Isidore, as a charter school, would be a state-created religious institution. This issue was also addressed at oral argument before the U.S. Supreme Court by Justices Kagan and Sotomayor.

The key distinction between the two cases seems to be that in Drummond, the issue was whether State funds could be used to create a new religious institution, whereas in Loffman, the issue was whether the Plaintiffs could not receive special education benefits they would have been entitled to had they sought to place their students in nonsectarian schools.

Reading Loffman and Drummond together may be illustrative of how courts going forward will address the issue of allowing religious institutions to access public funds. On the other hand, the U.S. Supreme Court’s split on Drummond makes it unclear whether the distinction between the two cases will prove meaningful in the future.

California LEAs should be aware that, pursuant to the injunctions agreed upon by the parties in Loffman, the Ninth Circuit will declare that the California Education Code’s nonsectarian requirement is unconstitutional under the Free Exercise Clause, and CDE will be prohibited from enforcing it. Accordingly, CDE will not require nonpublic entities to be nonsectarian or attest to nonsectarian status in applying for, obtaining, or maintaining contracts to serve as a nonpublic schools for the placement of students with exceptional needs.

Should you have specific questions regarding the content of this Alert or your agency’s response to the Executive Order, please contact the authors of this Alert or your usual AALRR counsel.

Education Research Cuts

In The Politics of Autism, I write about social services, special education, and the Individuals with Disabilities Education Act. 

According to the National Center for Education Statistics, 7.5 million children 3 to 21 years old received services under the Individuals with Disabilities Education Act in AY 2022-23.

About 980,000 of them were autistic, up from 498,000 in 2012-13.

The Trump administration is halving the staff of the Department of Education.

Lexi Lonas Cochran at The Hill:

The educational research community is looking to pick up the pieces after the Trump administration has canceled dozens of studies and ended hundreds of jobs.

In line with the Department of Government Efficiency (DOGE), hundreds of federal contracts have been canceled with education research groups, accused by the administration of either being useless or simply too “woke.” Longitudinal studies on early childhood education and artificial intelligence literacy are among those that have taken significant hits.

...

“We’ve had a number of projects canceled, including some very long-standing research projects, namely the Regional Education Labs that WestEd has been part of for almost its entire history, so 59 years,” said Jannelle Kubinec, CEO of WestEd, adding studies relating to reading, chronic absenteeism and math and numeracy have also been terminated.

...

“Across the board, we’re really talking about a complete capacity downsize. It’s people, it’s money, it’s spaces, it’s resources. So, it’s definitely a lot all at once […] Outside of contract cancelations and risk, a lot of the harm is yet to come,” said Jinann Bitar, higher education research and data analytics at EdTrust.

Along with interruptions in longer studies, the turbulence in the field has led to hesitation in researchers wanting to start a career in this area, as there are few safe spaces for the studies left.

“This is going to be gut-stopping for current researchers, but it’s actually going to be almost impossible to overcome for early-career researchers if they don’t have anywhere stable to be in the meantime on their research,” said Bitar.

Bleach 2025

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

Jabed Ahmed at The Independent:

A social media influencer is promoting industrial bleach as a false “autism cure”, despite health warnings and reports from parents that their children have become seriously ill after following her advice.

Kerri Rivera, who has more than 17,000 followers on Instagram, encourages parents to give their autistic children chlorine dioxide (CD) — a potentially lethal chemical used to bleach textiles and disinfect industrial surfaces.

Experts have called her fake cures “sickening”, adding it is “wrong, dangerous and harmful to autistic people and their families”.

Messages seen by The Independent from Ms Rivera’s private support group reveal parents reporting vomiting, rashes, seizures and chemical-smelling urine in their children after following her advice.

One parent wrote: “I have noticed a high ammonia-smelling urine in my daughter's pull-ups... I imagine these are the parasites dying and leaving behind their toxins. Is this a good sign to be smelling this?”

Ms Rivera, who falsely claims that autism is caused by “parasites” and “worms”, routinely reassures parents that these are signs the treatment is working. She refers to symptoms like vomiting and hives as evidence that the body is “detoxifying”.

Her Instagram account states “autism is treatable” – a categorically false claim.

Ms Rivera’s Instagram account has more than 17,000 followers, while her TikTok has attracted over 3,000.

After The Independent contacted TikTok for comment, a spokesperson confirmed the account had been deactivated. Meta has been approached for comment.

...

A petition to remove Ms Rivera’s account has been signed by more than 30,000 people.

Institute for Education Sciences

In The Politics of Autism, I write about social services, special education, and the Individuals with Disabilities Education Act. 

According to the National Center for Education Statistics, 7.5 million children 3 to 21 years old received services under the Individuals with Disabilities Education Act in AY 2022-23.

About 980,000 of them were autistic, up from 498,000 in 2012-13.

The Trump administration is halving the staff of the Department of Education.

Sara Weissman at Inside Higher Ed:

The U.S. Department of Education has hired a new senior adviser to the secretary of education tasked with reforming the Institute of Education Sciences, according to a Friday announcement.

The department’s pick, Amber Northern, is on leave from her role as senior vice president for research at the Thomas B. Fordham Institute, a conservative education policy think tank. The announcement said IES, which houses the National Center for Education Statistics, has “failed to provide a clear and compelling research agenda that puts students at the center.” Department officials also accused IES of prioritizing “politically charged topics and entrenched interests” in its research contracts.

The move comes after the Education Department axed $900 million in IES contracts in February then fired more than 80 percent of its 120 employees a month later as part of wider layoffs across the department. Multiple lawsuits have been filed by research groups in response to the cuts.

Peter Greene at Forbes reports on the Trump budget request:

Everything under the Institute of Education Sciences (IES), the research wing of the department, is an asterisk until the administration is done “reimagining a more efficient, effective, and useful IES.” However, the funding for the National Assessment of Educational Progress (NAEP), the test that measures how U.S. students are doing, is still there, albeit reduced from $193 million to $137 million.

 

Vaccines and Autism: Lit Review

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.

Gulati, S., Sharawat, I. K., Panda, P. K., & Kothare, S. V. (2025). The vaccine–autism connection: No link, still debate, and we are failing to learn the lessons. Autism, 0(0). https://doi.org/10.1177/13623613251345281

In the post-COVID-19 era, vaccine hesitancy remains a critical challenge, despite clear evidence of the life-saving benefits of childhood vaccinations, which prevent morbidity and mortality while reducing healthcare costs (Andre et al., 2008; Ozawa et al., 2016). Hesitancy is particularly prevalent among caregivers of autistic children, contributing to delayed or incomplete vaccination in this group. Studies show that autistic children are less likely to be fully vaccinated compared to their non-autistic peers, and this hesitancy extends to younger siblings (Cummings et al., 2016; Filliter et al., 2017; Gerber & Offit, 2009; Mitchell & Locke, 2015; Pluviano et al., 2019; Zerbo et al., 2018). The persistent belief in the now-debunked link between vaccines, especially the MMR vaccine, and autism continues to drive hesitancy. Despite the extensive scientific refutation of this claim, caregivers of children with autism diagnoses often hold disproportionate fears that vaccines cause or worsen autism, even when they are aware of the lack of evidence (Cummings et al., 2016; Gerber & Offit, 2009; Pluviano et al., 2019). Post-pandemic, new factors have emerged, including heightened concerns related to sensory sensitivities, phobias, and logistical barriers in medical settings, all of which complicate vaccine uptake. While some studies suggest a declining belief in the vaccine–autism link among the general population (Filliter et al., 2017; Mitchell & Locke, 2015), it remains uncertain whether these shifts apply to caregivers of autistic children.

MAHA AI BS

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 presidential candidate 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.

Caitlin Gilbert, Emily Wright, Fenit Nirappil and Lauren Weber at WP:

The White House’s “Make America Healthy Again” report, which issued a dire warning about the forces responsible for Americans’ declining life expectancy, bears hallmarks of the use of artificial intelligence in its citations. That appears to have garbled citations and invented studies that underpin the report’s conclusions.

Trump administration officials have been repeatedly revising and updating the report since Thursday as news outlets, beginning with NOTUS, have highlighted the discrepancies and evidence of nonexistent research.

Department of Health and Human Services spokesman Andrew Nixon said that “minor citation and formatting errors have been corrected, but the substance of the MAHA report remains the same — a historic and transformative assessment by the federal government to understand the chronic disease epidemic afflicting our nation’s children.” .

...

• The referenced report is real. But the inclusion of "oaicite," a marker of the use of OpenAI, in the URL offers a definitive sign that artificial intelligence was used to collect research.
•  This dead URL was live as recently as 2017, according to archived versions of the site. AI experts said chatbots can produce outdated links in response to queries because they were trained using older material.

  Margaret Manto and Emily Kennard at NOTUS:

The Trump administration’s clean up of the “Make America Healthy Again” Commission’s hallmark and error-riddled report is opening new questions about how the report’s authors drew some of its sweeping conclusions about the state of Americans’ health.

At least 18 of the original report’s citations have been edited or completely swapped out for new references since NOTUS first revealed the errors Thursday morning. While some of the original report’s inconsistencies have been changed, a few of the new updated citations continue to misinterpret scientific studies.

Genetic Research

 In The Politics of Autism, I discuss various ideas about what causes the condition. Genetics plays an important role.  “I’m told that there was a 20-to-1 research ratio for genetic causes over the past 20 years,” HHS Secretary Robert F. Kennedy Jr. recently said. “I believe that was because they did not want to look at the environmental exposure because they were scared. So I don’t think we should be funding that genetic work anymore.”

Dylan Scott at Vox:

If Kennedy were serious about moving autism science forward, he would be talking more about genetics, not dismissing them. That’s because genetics is where all of the exciting drug development is currently happening.

A biotech firm called Jaguar Gene Therapy has received FDA approval to conduct the first clinical trial of a gene therapy for autism, focused on SHANK3. The treatment, developed in part by one of Buxbaum’s colleagues, is a one-time injection that would replace a mutated or missing SHANK3 gene with a functional one. The hope is that the therapy would improve speech and other symptoms among people with high-needs autism who have also been diagnosed with a rare chromosomal deletion disorder called Phelan-McDermid syndrome; many people with this condition also have Autism spectrum disorder.

The trial will begin this year with a few infant patients, 2 years old and younger, who have been diagnosed with autism. Jaguar eventually aims to test the therapy on adults over 18 with autism in the future. Patients are supposed to start enrolling this year in the trial, which is focused on first establishing the treatment’s safety; if it proves safe, another round of trials would start to rigorously evaluate its effectiveness.

“This is the stuff that three or four years ago sounded like science fiction,” Singer said. “The conversation has really changed from Is this possible? to What are the best methods to do it? And that’s based on genetics.”

Researchers at Mount Sinai have also experimented with delivering lithium to patients and seeing if it improves their SHANK3 function. Other gene therapies targeting other genes are in earlier stages of development. Some investigators are experimenting with CRISPR technology, the revolutionary new platform for gene editing, to target the problematic genes that correspond to the onset of autism.

But these scientists fear that their work could be slowed by Kennedy’s insistence on hunting for environmental toxins, if federal dollars are instead shifted into his new project. They are already trying to subsist amid deep budget cuts across the many funding streams that support the institutions where they work.

MAHA Fakery

 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 presidential candidate 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.

Emily Kennard and Margaret Manto at NOTUS:

Health Secretary Robert F. Kennedy Jr. says his “Make America Healthy Again” Commission report harnesses “gold-standard” science, citing more than 500 studies and other sources to back up its claims. Those citations, though, are rife with errors, from broken links to misstated conclusions.

Seven of the cited sources don’t appear to exist at all.

Epidemiologist Katherine Keyes is listed in the MAHA report as the first author of a study on anxiety in adolescents. When NOTUS reached out to her this week, she was surprised to hear of the citation. She does study mental health and substance use, she said. But she didn’t write the paper listed.

“The paper cited is not a real paper that I or my colleagues were involved with,” Keyes told NOTUS via email. “We’ve certainly done research on this topic, but did not publish a paper in JAMA Pediatrics on this topic with that co-author group, or with that title.”

It’s not clear that anyone wrote the study cited in the MAHA report. The citation refers to a study titled, “Changes in mental health and substance abuse among US adolescents during the COVID-19 pandemic,” along with a nonfunctional link to the study’s digital object identifier. While the citation claims that the study appeared in the 12th issue of the 176th edition of the journal JAMA Pediatrics, that issue didn’t include a study with that title.

As the Trump administration cuts research funding for federal health agencies and academic institutions and rejects the scientific consensus on issues like vFromaccines and gender-affirming care, the issues with its much-heralded MAHA report could indicate lessening concern for scientific accuracy at the highest levels of the federal government.

From ASAN:

The Autistic Self Advocacy Network condemns the release of the Make America Healthy Again (MAHA) Commission’s most recent report. The Commission was created to try and lower the rate of “autism and other chronic health conditions” in the United States. Lowering the rate of autism is not possible given that autism is a hereditary developmental disability.

Much of what the report talks about is not actually a problem. It presumes that a condition getting diagnosed more often, or more people getting care for it, must mean that the condition is getting more common or getting worse. The truth is that in many cases there have been improvements to the accessibility of health care, as well as improved criteria for diagnosis. For example, the increased prevalence of autism diagnosis is thanks to better access to screening and improved understanding of autism, especially for people of color, women, and LGBTQI+ autistics. Doing a better job of identifying a condition and helping more people get supports for it is a good thing, not proof of an “epidemic.” ASAN remains committed to debunking disinformation and scare tactics from the MAHA Commission.

 

 

 

Early Diagnosis and Medicaid

In The Politics of Autism, I discuss evaluation and diagnosis.

Lindly, O. J., Abate, D., Fuchu, P. L., Kuhn, J. L., Mudnal Bharath, P. S., Asantewaa, S. M., Feinberg, E., & Broder-Fingert, S. (2025). The impact of state policy on early autism diagnosis: A qualitative investigation. Autism, 0(0). https://doi.org/10.1177/13623613251336813

Lay abstract:

In the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study’s findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis.

From the article:

Many participants noted that children with Medicaid often have a more challenging time obtaining autism evaluation due to low reimbursement rates and limited providers who will accept Medicaid coverage for autism evaluation across the five states. These challenges with Medicaid coverage and access to autism diagnostic services were attributed to longer wait times for poor and rural families, thereby perpetuating inequity in early autism diagnosis. According to one participant:

We have [. . .] approximately 50, that I know of, professionals that can diagnose autism. Or actively do. Out of that 50, there’s probably five, that I know, who are quality, qualified autism experts that accept AHCCCS [Arizona Health Care Cost Containment System, Medicaid] payments for those evaluations. So, if you don’t have private insurance or you can’t afford a private evaluation, you are . . . sent to Phoenix Children’s Hospital. And their wait list is . . . 12 to 18 months. (Participant 33, Arizona)

Participants additionally explained that when an autism evaluation does not yield a diagnosis, parents may be forced to pay out of pocket for the evaluation because their insurance plan will not cover the cost. Nevertheless, participants explained how some healthcare organizations have determined ways to ensure that children with Medicaid receive an autism diagnosis. For example, several participants described that some academic medical centers could pursue supplemental payment for low Medicaid reimbursement rates through state programs such as early and periodic screening, diagnostic, and treatment (EPSDT). Some participants elaborated that Medicaid coverage may be a greater barrier to early diagnosis in states where the Medicaid program does not accept autism as a qualifying diagnosis (regardless of income) for eligibility.