Autism Policy and Politics

Thursday, May 7, 2026

IACC Meeting Went as One Would Expect

In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.

RFK Jr. has stacked it with his own type of people.

Scientists have expressed concerns about last week’s meeting of the newest Interagency Autism Coordinating Committee (IACC), raising questions about the meeting’s content, process and impact on future U.S. federal funding for autism research.

“The day was slightly unhinged,” says David Mandell, professor of psychiatry at the University of Pennsylvania Perelman School of Medicine and former IACC member, who attended the public meeting virtually.

U.S. federal law mandates that the IACC—which coordinates the Department of Health and Human Services’ efforts on autism—convene at least twice annually to develop a strategic plan for autism research. But the latest IACC gathering on 28 April did not deliver on that goal, according to Mandell and other former committee members who listened to the meeting.

Instead, the committee pushed forward three policy proposals in a way that may have violated federal law, according to Mandell and statements by the Autism Science Foundation and the Autistic Self Advocacy Network.

The main topics in these proposals—profound autism, challenging medical comorbidities and the dangers of wandering and elopement—are worthy of discussion and policy change, Mandell says. “I can make common cause with some of the concerns and ideas that were expressed.”
But completely absent from the agenda was any development of a strategic plan “for conduct of, and support for, autism spectrum disorder research” as stipulated by the Autism CARES Act, former IACC member Alycia Halladay, chief science officer of the Autism Science Foundation, told The Transmitter.

Wednesday, May 6, 2026

Telehealth and Diagnosis

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

A release form UC Riverside:

When the COVID-19 pandemic shut down clinics and forced face-to-face interactions behind masks, autism diagnoses for many children came to a halt. For Katherine Meltzoff, a professor of education at UC Riverside, the disruption exposed a critical gap and an opportunity. "We were trying to figure out how to adapt autism diagnostics to be done virtually," Meltzoff said.

New virtual tools for diagnosis

The result is a set of telehealth tools described in a paper published in the Journal of Autism and Developmental Disorders that are designed to help clinicians diagnose autism remotely, especially for children who are older or have developed verbal communication skills.

Meltzoff explained that there are already a number of validated virtual autism assessment tools for children aged 3 and below, and for those with minimal spoken language, but not for those who are older and have more verbal speech.

"Telehealth seems to work really well for the kids that have more obvious symptoms and that are younger," said Meltzoff, the lead author.

Meltzoff's research tested whether these virtual assessments could match the accuracy of traditional, in-person evaluations, offering a potential solution to long-standing barriers in autism diagnosis.

How autism is typically assessed

Autism spectrum disorder is not diagnosed through a single medical test. Clinicians observe how a child communicates, interacts socially, and responds to the world, while also reviewing developmental history.

"We diagnose it behaviorally, so we're looking at behaviors that the child displays," Meltzoff explained.

During the first months of the COVID-19 pandemic, autism assessments came to a halt due to the widespread "shelter at home" guidelines.

As restrictions began to ease, assessments remained challenging because facemasks worn by the clinicians and family members hid facial expressions, which are a large part of the social communication and behaviors under evaluation.

Recreating clinic sessions online

In traditional clinical settings, those observations happen during carefully structured, in-person sessions. For her study, Meltzoff recreated those interactions online.

Using videoconferencing tools, clinicians guided parents through activities—such as calling a child's name or engaging in play—while observing how the child responded. For older children, clinicians interacted directly with them through conversation and structured tasks.
Comparing telehealth and in-person results

To test accuracy, Meltzoff and her team recruited 39 children seeking autism evaluations through a university-based clinic. Each child underwent two separate assessments—one in-person and one via telehealth—conducted by different clinical teams who were unaware of each other's conclusions.

The results were promising. One of the tools developed for children whose speech is limited to short phrases showed particularly high accuracy, while another designed for more verbally fluent children was effective in many cases but less consistent.

The study also found that parents were largely satisfied with telehealth assessments, suggesting the approach is both feasible and acceptable for families.
Improving access for families

The need for alternatives to in-person diagnosis is significant, Meltzoff said.

"A lot of people live two hours from an autism clinic," she said. "Getting your kid two hours to a clinic, then doing an appointment and two hours home just isn't really feasible."

The approach is especially important for families in rural areas or those with limited financial resources. For some, transportation costs or lack of access to reliable transit can make in-person visits difficult.

Additionally, a formal autism diagnosis is often required to access essential services. While schools can provide some support without a clinical diagnosis, insurance coverage for therapies typically depends on one. Those services include speech therapy, occupational therapy, and one-on-one behavioral interventions—all of which can be critical for helping children develop communication and life skills.
Limits of telehealth for complex cases

Still, Meltzoff cautions that telehealth is not a one-size-fits-all solution. Children with more subtle symptoms or co-occurring conditions such as attention deficit and hyperactivity disorder (ADHD) may still require in-person evaluations for accurate diagnosis.

The paper's title is "A Telehealth Diagnostic Tool for Autistic Children With Phrased and Fluent Speech: Comparison to In-person Diagnosis." In addition to Meltzoff, its co-authors are Cameron Alexander, Amy Hoffman, and Jan Blacher, all with UCR's School of Education.

"I don't want to oversell it," Meltzoff said. "It works for most kids, but more complex cases—the ones that are already difficult even when done in-person—can be harder to evaluate remotely."

Even with those limitations, the study validates new tools for children with a wider range of communication abilities.

"How accurate is telehealth?" Meltzoff asked rhetorically. "We found it's pretty good."

Tuesday, May 5, 2026

MMR Vaccine Hesitancy and Right-Wing Media

In The Politics of Autism, I examine the role of social media in the development of the issue.

Amelia M. Jamison, Samee Saiyed, Lauren M. Gardner, "MMR vaccine hesitancy in a polarized information ecosystem: Results from a cross-sectional survey of US adults, Vaccine, Volume 81, 2026, 128568, ISSN 0264-410X, https://doi.org/10.1016/j.vaccine.2026.128568.

Abstract
Objectives
To characterize MMR vaccine hesitancy in US adults amid the 2025 measles outbreaks, with specific focus on the role of an individual's media habits.
Methods
We conducted an online panel survey in August 2025, with 2970 US-based, English-speaking adults (≥18 yrs). We conducted bivariate analyses with chi-square tests to characterize differences between hesitant and non-hesitant adults. We used logistic regression modeling to identify factors associated with MMR hesitancy.
Results
Overall, 17% (n = 501) of adults believed the risks of MMR outweighed the benefits. Most adults engaged with a wide range of digital media, but engagement with “new" right media outlets (e.g., Breitbart) was associated with increased odds of MMR hesitancy (adjusted odds ratio [AOR] = 2.08; 95% confidence interval [CI] = 1.64, 2.82). Seeking health information from non-authoritative sources both online (e.g., social media influencers AOR = 1.41; CI = 1.06, 1.98; alternative health newsletters AOR = 1.39; CI = 1.01, 1.90) and offline (e.g., alternative health practitioners AOR = 1.70; CI = 1.31; 2.35) was also associated with increased odds of MMR hesitancy.
Conclusions
In an increasingly fragmented information ecosystem where news coverage of public health events is politically polarized, individual media and health information seeking preferences emerge as key correlates of MMR vaccine hesitancy. Specifically, engagement with “new” right media and seeking health information from alternative healthcare providers were the strongest associated factors with MMR hesitancy, whereas reliance on physicians for health information had the most protective effect.

From the article:

Only engagement with spaces outside of the mainstream, particularly right-leaning “new" media channels, was associated with increased MMR hesitancy; engagement with legacy right outlets (e.g. Fox or New York Post) was not significant. These findings build on prior studies that have highlighted the connection between right-leaning media and vaccine hesitancy [8,36,37]in two critical ways; first, we reinforce findings that “mainstream” media consumption was not generally associated with vaccine hesitancy, and extend this finding beyond media outlets to include more mainstream social media platforms and digital news services; and second, we more narrowly identify the subset of "new" right media sources as having associations with MMR hesitancy. More generally, our findings suggest that when everyone is already engaging online, where and how they choose to do so matters.
We identified more marked differences between hesitant and non-hesitant adults with respect to their health-seeking behavior compared to their general media preferences, aligning with the growing body of literature documenting how health information seeking habits significantly influence vaccine attitudes [20]. In particular, hesitant adults were more likely to utilize internet and social media sources for vaccine information, whereas non-hesitant adults were less likely to engage with the sources we classified as non-authoritative (e.g., alternative health providers, online health influencers, alternative health newsletters), suggesting greater selectivity in their consumption of health information. Alternately, it may suggest that increased hesitancy could drive more health information seeking as individuals seek to address concerns or conflicting evidence. This finding adds complexity to previous work – during previous outbreaks– that have found associations between online health information sources and MMR hesitancy [22,38]. More research is needed to understand the directionality of this relationship vis-a-vis the media landscape: are hesitant adults actively seeking out non-authoritative sources, or are susceptible groups disproportionately being digitally targeted by these sources? Or are non-hesitant adults simply better able to filter out non-authoritative information? Or is the relationship bi-directional, creating a feedback loop in any of the scenarios?

[8] Sturgis P, Brunton-Smith I, Jackson J. Trust in science, social consensus and vaccine confidence. Nat Hum Behav 2021;5:1528–34.
[22] Cataldi JR, Dempsey AF, O’Leary ST. Measles, the media, and MMR: impact of the 2014–15 measles outbreak. Vaccine 2016;34:6375–80. https://doi.org/10.1016/j. vaccine.2016.10.048.
[36] Borah P, Ghosh S, Hwang J, Shah DV, Brauer M. Red media vs. blue media: social distancing and partisan news media use during the COVID-19 pandemic. Health Commun 2024;39:417–27. https://doi.org/10.1080/10410236.2023.2167584.
[37] Baumgaertner B, Carlisle JE, Justwan F. The influence of political ideology and trust on willingness to vaccinate. PloS One 2018;13:e0191728. https://doi.org/ 10.1371/journal.pone.0191728.
38] Christianson B, Sharif-Mohamed F, Heath J, Roddy M, Bahta L, Omar H, et al. Parental attitudes and decisions regarding MMR vaccination during an outbreak of measles among an undervaccinated Somali community in Minnesota. Vaccine 2020;38:6979–84.

AND SEE THE LINDELL WHITEBOARD.

Monday, May 4, 2026

Neurodivergence and Social Media

In The Politics of Autism, I examine the role of social media in the development of the issue.

Carter, A., Gracey, F., Moody, J., Ovens, A., & Chatburn, E. (2026). Quality, reliability and misinformation in mental health and neurodivergence content on social media: a systematic review. Journal of Social Media Research, 3(1), 30–47. https://doi.org/10.29329/jsomer.84

Social media is increasingly used for health information seeking, yet no systematic review has assessed the quality of mental health or neurodivergence-related information on social media. This systematic review aimed to assess the quality, reliability, and prevalence of misinformation in such content, comparing findings across platforms and topics. Searches were performed in MEDLINE Ultimate, APA PsycINFO, CINAHL, and Scopus. Studies were eligible if they evaluated the accuracy, quality, or reliability of mental health or neurodivergent-related information on social media platforms. Twenty-seven studies met the inclusion criteria and were critically appraised using a bespoke tool assessing the search, evaluation, and methodological quality. Due to heterogeneity, the findings were synthesized narratively. Across the 27 included studies, 5057 social media posts were analysed. Misinformation prevalence ranged from 0% to 56.9% and was higher on TikTok than YouTube, and neurodivergence-related content showed higher misinformation prevalence than mental health topics. Information quality and reliability varied widely but were generally higher for professionally created content. These findings highlight a clear need for action: mental health and neurodivergence organizations should create and share accurate, evidence-based content to counter misinformation, and clinicians should be supported to do the same. There is a need for strengthened content moderation, as well as consistent definitions and measures of mental health misinformation. Addressing these issues is vital to protect public mental health and improve the reliability of online information.

Sunday, May 3, 2026

“HHS’ Assault on Autistic People and Public Health”

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

In addition to spreading lies about vaccines, he is hurting autistic people in other ways, too.

From the Autistic Self-Advocacy Network and the American Association of People with Disabilities:

In the last year, the Department of Health and Human Services (HHS) made many dangerous changes to what it does and how it works. The changes HHS made have hurt public health in the US, especially for autistic people. HHS has done so many things that it is hard to keep up with everything. HHS has also spread misinformation that makes it hard to know how to keep each other safe. That’s why the Autistic Self Advocacy Network (ASAN) and the American Association of People with Disabilities (AAPD) made “HHS’ Assault on Autistic People and Public Health”.

This toolkit talks about:

Secretary of Health and Human Services Robert F. Kennedy Jr
The history of Make American Healthy Again (MAHA)
How HHS has hurt public health, especially autistic people, in the last year

“HHS’ Assault on Autistic People and Public Health” is available in a Plain Language version and a Formal Language version. There are also detailed infographics. You can use them to find more information about specific issues.

HHS is supposed to support public health to keep all Americans healthy. Secretary Kennedy has done the opposite. It is important to understand how HHS has hurt people and stop them from hurting more. Autistic people deserve to live in a world without our government spreading lies that endanger us. All politicians need to protect their constituents, but we cannot do that until we recognize the harm Secretary Kennedy is spreading.

Plain Language Version To download the full Plain Language Version of HHS’ Assault on Autistic People and Public Health click here.

Formal Language Version To download the full Formal Language Version of HHS’ Assault on Autistic People and Public Health click here.

Timeline Infographics

1. Miscellaneous Administration Actions
2. Congressional Actions
3. Funding
4. Make America Health Again (MAHA) Commission
5. Vaccine Actions & Outbreaks
6. Advisory Committee on Immunization Practices (ACIP)
7. Department of Health and Human Services (HHS) Staffing
8. Autism Actions
9. Public Response
10. Interagency Autism Coordinating Committee (IACC)
11. Vaccine Actions, Outbreaks, & ACIP

Saturday, May 2, 2026

Minnesota Fraud Update

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Scams plague the world of autism. Some involve shady or abusive providers.

Conor Wright at CBS Minnesota:

The five autism service centers raided by federal law enforcement on Tuesday as part of an apparent series of fraud investigations all utilize money from the same state program that two other providers have already pleaded guilty to stealing from.

For at least one expert in the field, it's a program that became unexpectedly popular to try to defraud. The Early Intensive Development and Behavioral Intervention program is designed to provide reimbursements to agencies that provide medical assistance to people with autism under the age of 21. On Tuesday, during the raids, state officials announced that the investigations at the autism service centers were directly related to EIDBI.

"This is an important action for families who rely on autism services and for Minnesota taxpayers fed up, as I am, with criminals taking advantage of the systems we have in place to deliver social services," Department of Human Services Commissioner Shireen Gandhi said, in part, in a statement.

EIDBI has been under a spotlight now for several years. According to the Minnesota Office of the Legislative Auditor, the number of provider agencies went from nearly 150 in 2020 to more than 500 in 2024. The total annual cost went from $38.1 million to $324.9 million in the same time period.

Dr. Eric Larsson, executive director of clinical services at the Lovaas Institute Midwest, said that he initially believed the program was effectively protected by the mountain of bureaucratic red tape required to get a child to qualify for the program. He began to see red flags, however, when he directed his team to start contacting providers in 2024 to help fill gaps after some agencies began to stop seeing new clients in the wake of the COVID-19 pandemic.

"There were 200 that you just couldn't call them, couldn't email them, they didn't have a website. How did they get on the DHS rolls?" Larsson said.

Friday, May 1, 2026

1,814 Measles Cases in 2026

From CDC:

As of April 30, 2026, 1,814 confirmed* measles cases were reported in the United States in 2026. Among these, 1,803 measles cases were reported by 37 jurisdictions: Alaska, Arizona, California, Colorado, Florida, Georgia, Idaho, Illinois, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Montana, Nebraska, New Jersey, New Mexico, New York City, New York State, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Texas, Utah, Vermont, Virginia, Washington, and Wisconsin. A total of 11 measles cases were reported among international visitors to the United States.

There have been 24 new outbreaks** reported in 2026, and 93% of confirmed cases (1,688 of 1,814) are outbreak-associated (415 from outbreaks starting in 2026 and 1,273 from outbreaks that started in 2025).

For the full year of 2025, a total of 2,288 confirmed* measles cases were reported in the United States. Among these, 2,263 measles cases were reported by 45 jurisdictions: Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maryland, Michigan, Minnesota, Missouri, Montana, Nebraska, Nevada, New Jersey, New Mexico, New York City, New York State, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington, Wisconsin, and Wyoming. A total of 25 measles cases were reported among international visitors to the United States.

There were 48 outbreaks** reported in 2025, and 90% of confirmed cases (2,065 of 2,288) were outbreak-associated. For comparison, 16 outbreaks were reported during 2024 and 69% of cases (198 of 285) were outbreak-associated.

Thursday, April 30, 2026

Sen. Murray v. Secretary McMahon

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

An April 28 release from Sen. Patty Murray (D-WA):

Today,—at a Senate Appropriations Labor, Health and Human Services, Education, and Related Agencies Subcommittee hearing on the FY27 budget request for the Department of Education (ED)—U.S. Senator Patty Murray (D-WA), Vice Chair of the Senate Appropriations Committee, questioned Secretary Linda McMahon on how her efforts to dismantle the Department of Education are hurting students...Senator Murray began by noting grave concern that ED is ignoring parents who don’t want management of programs to protect the rights of students with disabilities to be transferred from ED to other agencies with little to no relevant expertise or experience.

MURRAY: Let me just start with this: look I am really concerned you’re not listening to parents of children with disabilities and their profound objections to moving IDEA and Rehabilitation Act programs out of the Department of Education.

I’ve gotten a petition from thousands of parents, educators, advocates who are concerned that will really undermine 50 years of progress in making sure the rights of children and students with disabilities are met.

So, I wanted to ask you today, what is the status of moving programs for children and students with disabilities out of the Department of Education?

MCMAHON: Well, currently, we are still evaluating of where those programs would best be located. We have not made that determination yet. We are looking at the Department of Labor for some of its programs and we are also looking at HHS for a potential home for some of those programs. I can assure you that the intent of this administration is not to put these students at risk in any way whatsoever. I have met—I have not received thousands of applications as you have but I have met with parent groups all over the country who have children with disabilities. We have talked about what they need. And, I have said to each of them, who is better positioned to know what your children need then you working with them and then working with your local school board—

MURRAY: That is exactly why these parents and advocates are spitting mad because what they want to make sure is that their child with a disability has an education. And moving it out of the Department of Education is not only undermining that … But [parents] want their kids to get a good education and that is why I am hearing from so many parents. So, I am deeply concerned that your answer sounds like you’re still moving ahead. Just—let’s make it clear: that will break the law, and it will make it a lot harder for these students with disabilities to get the education and the understanding that their country will stand behind them with that.

MCMAHON: Well, I just have to object to your framing of this. First of all, it is not against the law. And, secondly, these parents need to understand that regardless of which department these programs are located, they will still get the same treatment, the same funding.

MURRAY: Well, are you under the Department of Education which says that your education is the priority—that’s their concern. But let me move on. Because I have several other questions and my time is limited.

[Dismantling ED Decimates Protection of Students Civil Rights]

Senator Murray continued by pressing Secretary McMahon about how her efforts to dismantle the Department of Education have led to a precipitous drop off in resolution of students’ cases managed by the Office for Civil Rights.

MURRAY: Let me ask you, a little over a year ago, you made the decision to eliminate more than half the staff in the Office for Civil Rights and close half of the regional field offices.

Now, you’ve testified repeatedly that students won’t even notice your efforts to abolish the Department—but I’d like to hear you tell that to the students and parents who have yet to hear anything about their case, let alone have it be fully investigated and resolved.

Because you know—in President Trump’s first year of his first term, OCR resolved about 60 sexual harassment cases and 15 sexual assault cases.

Can you tell me how many of these cases were resolved in the first year of this term?

MCMAHON: Well, I can tell you what we are doing with our OCR program. We are definitely moving forward. We inherited—

MURRAY: No, I asked how many—

MCMAHON: We inherited about 19,000 backlog of cases from the Biden administration—

MURRAY: How many of those were resolved last year?

MCMAHON: So, what we have done, and I have hired into the Department of Education, Kim Richey, who was the director of that department—

MURRAY: I had a quick question, and I have more questions, so I want you to answer the question I asked [which] is how many of those cases were resolved last year?

MCMAHON: We are moving to resolve as many cases as we can, we are bringing back many of those lawyers which were part of that RIF. And there was a time when we were not processing cases as quickly as we should, but we are now focused on that and moving forward with the expertise—

MURRAY: For the record, the answer to my question is zero.

MCMAHON: We are moving forward to resolve those cases today.

MURRAY: Okay, as of this morning, 1% of all cases last year were resolved. 78% fewer cases were resolved than the year before. And really, we have to understand what that means is that kids are being denied equal access to education they are entitled to under law are now also being denied the justice they deserve.

And that is really wrong. So, you said you’re hiring people back, I want to see what those numbers are, I want to see what cases are being resolved because I think it’s really our responsibility to make sure those kids get the education they are promised.

MCMAHON: Well, I’d be anxious to share those with you because—

MURRAY: Well, right now, it’s zero.

MCMAHON: What we’re putting in place is to move forward, and so I’ll be happy to share that with you—

MURRAY: Happy to hear that but just telling this committee that it’s going to happen someday, to me, is not making sure those kids get an education.

MCMAHON: Well, I’ve hired the person and brought them back who made all of those things work in the first Trump administration, left office with 4,500 backloaded cases, and inherited again 19,000 from the Biden administration and has a full on attack now to resolve those cases, and we’re moving forward to make sure that gets handled.

MURRAY: Just for the record, we expect to see progress.

MCMAHON: So, do I.

MURRAY: Okay, I’m glad to hear that.

Wednesday, April 29, 2026

IACC Endorses the Term "Profound Autism"

In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.

RFK Jr. has stacked it with his own type of people.

Robin Respaut at Reuters:

A U.S. advisory committee appointed by Health Secretary Robert F. Kennedy Jr. recommended on Tuesday that the government adopt the term "profound autism” for those with the ‌highest support needs, and improve gaps in medical care for people with autism.
The Interagency Autism Coordinating Committee helps guide federal autism research spending, worth about $2 billion annually, and coordinates efforts among government agencies, such as the National Institutes of Health and the Centers for Disease Control and Prevention.

...
The spotlight on high needs has been welcomed by some advocates who say those with profound autism were left behind as the definition and diagnosis of autism spectrum disorder expanded in recent years to include many high-functioning individuals. Others in the autism community oppose the designation as unnecessary and stigmatizing.
The committee also prioritized improving medical care for autistic patients who suffer from other health conditions, such as ⁠gastrointestinal, sleep, neurological, autoimmune and metabolic disorders. Such illnesses are sometimes undiagnosed by medical providers or assumed to be symptoms of autism, leaving patients without critical care, they said.
...
The public members of the committee, ⁠those appointed by Kennedy to represent the autism community, voted on Tuesday largely in support of making recommendations to him. Many of the federal members, those who represent relevant government bodies, voted to abstain, arguing that the agencies needed more time to review the proposals.
The panel's recommendations passed and will be sent to Kennedy.

.

Tuesday, April 28, 2026

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. According to the Social Security Administration: "Many parents and caretakers of children with disabilities lose work hours and income because of their children’s care needs. Supplemental Security Income (SSI) provides monthly financial support to low-income families with children who have developmental and behavioral disabilities. This includes ASD – and physical impairments."

Eli Hager at Pro Publica:

Now, President Donald Trump’s administration is poised to penalize people ... simply for living in the same home as their families, according to four federal officials, internal emails and a federal regulatory listing. The administration is working on a rule change that would deduct the value of a disabled adult’s bedroom from their SSI allotment, even if the family members they live with are poor enough to qualify for food stamps. This would mean slashing the benefits of some of the most low-income SSI recipients by up to a third — about $330 a month in Burton’s case — or ending their support altogether.

The effort to cut SSI for families who also rely on food stamps, also known as the Supplemental Nutrition Assistance Program, or SNAP, was initiated by top White House and Department of Government Efficiency officials last year, multiple Social Security officials said. It marks a second attempt by the Trump administration to quietly but dramatically downsize disability benefit programs overseen by the Social Security Administration, despite those programs’ strict eligibility standards and minimal instances of fraud. White House Budget Director Russell Vought and Social Security Commissioner Frank Bisignano abandoned a different proposed regulation involving disability payments last year after ProPublica and other news outlets reported on the harm that the plan would cause to hundreds of thousands of largely blue-collar workers in red states. (The disability programs are administered by the Social Security Administration but separate from the retirement program for which the agency is named. The Trump administration has promised not to cut Social Security retirement payments.)

The likely SSI cut will affect not just younger adults with disabilities such as Down syndrome and severe autism who are still living at home with their low-income parents, but also older people with health or financial problems who have had to move in with their adult children on tight budgets. All told, as many as 400,000 poor and disabled people and indigent older people across the United States could have their support cut or eliminated, according to a ProPublica analysis of actuarial figures from the Social Security Administration.

Sunday, April 26, 2026

Variation in Autism Diagnosis of Medicaid-Enrolled Children

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

A release from the Pediatric Academic Societies:

A new study examined geographic patterns in autism diagnosis by primary care providers among Medicaid-enrolled children in 29 states. The study found that Nevada, South Carolina and Connecticut had the highest rates of autism diagnosis by primary care providers. Findings from the study will be presented at the Pediatric Academic Societies (PAS) 2026 Meeting, taking place April 24-27 in Boston. This study is part of a larger research project, Addressing Structural Disparities in Autism Spectrum Disorder through Analysis of Secondary Data (ASD3), which is funded by the National Institutes of Health.

An autism spectrum disorder (ASD) diagnosis by a medical provider is often required for disability and therapy services access. Given long wait times and limited access to specialty care providers who typically diagnose ASD, some states have expanded primary care provider ASD diagnostic training. Yet little research has examined geographic patterns in primary care providers ASD diagnosis.

"Autism is typically diagnosed by specialists, but various factors such as long wait times can delay this process,” said the ASD3 investigative team. “Primary care providers can offer an additional pathway to early diagnosis, which is important for improving access to needed autism services and supports. Our study looked at Medicaid-enrolled children ages 1-5 in 29 states between 2017-2019, and found that 29% were diagnosed by primary care providers rather than specialists. Rates of autism diagnosis by primary care providers varied significantly between counties, states and regions. We believe that local practice patterns and specialist availability may contribute to this geographic variation."

The sample included 36,263 children across 933 county-sets in 29 states. Overall, 29% of children were diagnosed with ASD by a primary care provider. Regional percentages varied from a median of 20.0% among county-sets in the Midwest to 36.4% in the West. Within-region variation was also high, with interquartile ranges (IQRs) varying from 23.8% in the Midwest to 27.5% in the West. Within-region variation was also high when grouping county-sets by state. For example, the Northeast had both the third highest state (Connecticut, 53.1%) and the third lowest state (New Hampshire, 14.3%) as measured by their median county-set. The neighboring states of South Carolina (60.4%) and Georgia (17.9%), both in the South region, ranked second highest and fifth lowest, respectively. Within-state heterogeneity (IQR) was as low as 6.2% (Connecticut), 9.6% (New Hampshire), and 12.7% (Georgia) and as high as 35.7% (Colorado), 37.6% (Illinois), and 42.3% (Wyoming). Population density showed a slight trend with the densest quartile of county-sets having a median primary care provider diagnosis rate of 24.2%, and 28.6% for the least dense quartile.

Saturday, April 25, 2026

Academic Benefits of Early Intervention