Causation and Prevalence

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

Leana S. Wen at WP:

Outside of specific genetic diseases, scientists have identified more than 250 genes that are associated with a higher likelihood of ASD. As Maureen Durkin, a professor at the University of Wisconsin-Madison, explained to me, some of these genes are also associated with beneficial traits. “It’s not as simple as ‘these are causes of autism, and you’d want to edit them out of the genome,’” she said.

...

Data from around the world support expanded diagnosis as the key factor behind climbing autism rates. A study in Denmark, published in JAMA, attributed 60 percent of ASD’s increase to broadened criteria and better reporting. A study in Canada concluded that 33 percent of the increase was due to diagnoses switching from another condition. Fombonne noted that similar trends are seen in every country. “The fact that it happened everywhere at the same time is not suggestive of something happening in the environment,” he said.

The CDC’s reports support the expanded diagnosis theory as well. Before 2016, the highest ASD prevalence was among White children and kids from areas of higher socioeconomic status. As screening improved, disparities decreased; in 2020, higher prevalence was seen in Black and Hispanic children and the association with household income faded.

...

Are there any potential biological reasons for increasing autism rates? The experts I spoke to have differing views. Laurent Mottron, a University of Montreal psychiatrist and researcher, believes the number of people profoundly impacted by autism — what he calls “prototypical autism” — has not increased. Others, like Mandell and Durkin, said it’s possible that factors such as advancing parental age and better medical care that improves survival rates for premature infants could be contributing to the increase.

John Oliver on RFK, Vaccines, and Autism

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. 

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

John Oliver ripped RFK a new one. DIscussion of autism and vaccines starts at 24:00:

Bad Faith

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. 

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

Maya Goldman at Axios:

What they're saying: Kennedy's expedited timeline for the effort, and his resistance to the body of evidence disproving a link between vaccines and autism, suggest that he's looking to use the data to arrive at a specific conclusion, said Paul Offit, director of the Vaccine Education Center at the Children's Hospital of Philadelphia.

• "I think RFK Jr. has what no scientist should ever have, which is a non-falsifiable hypothesis," Offit said.
• HHS did not respond to a request for comment on these concerns.
• There is already ample evidence that factors like genetics and older parental ages at time of conception increase the likelihood of developing autism.

The other side: Data is necessary for health care research, and there's always more research that can be done.

• Kennedy and Bhattacharya have said they want to make replication of medical studies a centerpiece of what NIH does, pointing to fraud in the research community. The question is at what point could repeating accepted studies undermine science for political gain.
• "I was really happy to see renewed focus on the power of data and what data can do to transform the health care space," said Mitesh Rao, CEO of health data sharing company OMNY.
• The autism data collection effort could yield valuable insights for the federal government if it's done right, he said.
• A public-private partnership could help ensure everything runs smoothly, with private companies' expertise in privacy law and platforms that aid collaboration at scale, he said.

Yes, but: Many people with autism and other disabilities are rapidly losing trust in federal health officials, which could have a ripple effect through the autism research effort and beyond.

• Eli Brottman, policy director for a Chicago-based good government organization who has autism, told Axios he asked his therapist not to use diagnostic codes for autism in insurance claims after hearing about the NIH research initiative.
• "They've already reached all sorts of false conclusions," he said. "What makes me believe that the research is going to do anything other than attempt to support those conclusions?"
• "The concern isn't necessarily that the government has access to a diagnosis," said AJ Link, an autistic person and director of policy for New Disabled South. "It's that the government may weaponize it."

Explaining the Backlash Against a Registry

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. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.

 Ariana Eunjung Cha, Caitlin Gilbert and Fenit Nirappil at WP:

The Trump administration has retreated from a controversial plan for a national registry of people with autism just days after announcing it as part of a new health initiative that would link personal medical records to information from pharmacies and smartwatches.

...

Scientists, privacy experts and advocates for people with autism acknowledged the potential of the data efforts to advance research — with or without a registry. But, they added, the initiative hinges on a single, critical factor that is declining in some communities: trust in the Trump administration.

...

David Mandell, a professor of psychiatry at the University of Pennsylvania School of Medicine who focuses on autism, noted that the U.S. DOGE Service sought sensitive government information on individuals, including data from the IRS and Medicare program, as part of a crackdown on undocumented immigrants.

“We have really strong health data protections in our society for a really good reason,” Mandell said, “and this administration has given us no confidence that they will treat our data in the protected way that it should be treated.”

Even with privacy protections, the data would be problematic.

One of the biggest challenges is the fragmented U.S. health-care system. Unlike countries such as Denmark and Israel — which have national health systems and centralized databases used for pioneering autism research — medical data in the United States is scattered across separate systems run by hospitals, insurers, pharmacies and even individual doctors.

Merging data gathered for different purposes and maintained by different groups sometimes involves a lot of guesswork (such as matching up a billing address with the location where a smartwatch is registered). That is highly likely to yield duplicate entries, wrongly matched records and other errors that are difficult to account for.

That makes it difficult to trust findings, said researchers such as Catherine Lord, a psychologist at the David Geffen School of Medicine at UCLA.

 

Charter School Founder to Head Special Ed

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.

Madeleine Parrish, Arizona Republic:

U.S. Secretary of Education Linda McMahon announced that the founder of an Arizona charter school network for autistic students would temporarily join the Trump administration to help expand school choice options for students with disabilities.

During an April 25 visit to the Phoenix campus of Arizona Autism Charter Schools, McMahon said she hoped to diminish the “regulatory hurdles” for individuals looking to launch charter schools, which are publicly funded but privately run, while maintaining federal funding streams that support those efforts even as she seeks to dismantle the U.S. Department of Education at the direction of President Donald Trump.

During McMahon's visit, it was announced that Diana Diaz-Harrison, who founded Arizona Autism Charter Schools in 2013 after her son was diagnosed with autism, was named deputy assistant secretary for Special Education and Rehabilitative Services within the Education Department.

Diaz-Harrison said that in the new role, she would help create more programs nationwide for children on the autism spectrum, including by helping launch charter schools like hers.

Diaz-Harrison said in joining the Trump administration, she would celebrate the 50th anniversary of the Individuals with Disabilities Education Act, the federal law that guarantees students nationwide with a free and appropriate public education, and “create IDEA 2.0 to support more families, parents and professionals seeking to create programs that really specialize and cater, while supporting also our district partners in elevating their programming in special needs.”

...

McMahon and the Education Department are currently facing a lawsuit from families over the gutting of the Office for Civil Rights staff, including from a parent who had contacted the Office for Civil Rights over the use of restraint and seclusion on her autistic child but later found that the regional office handling her case had closed due to the Trump administration’s efforts to dismantle the agency. A group of Democratic senators recently sent a letter to McMahon with concerns about how the effort to dismantle the department would impact students with disabilities.

Mixed Message on Autism Registry

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. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.

Jakai Spikes at WTVC-TV Chattanooga:

In a Monday council meeting, the head of the National Institute of Health said they are creating a new National Disease Registry for Autism.

But when we reached out to the Department of Health and Human Services Thursday to ask if patients can opt out, they told us they have no plans to create 'an autism registry.'

"We are not creating an autism registry. The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies."

 That's despite National Institute of Health Director Dr. Jay Bhattacharya saying this in a NIH council meeting Monday...

"The platform will accelerate research and create new opportunities for cross agency use of data in real time, health monitoring, developing national Disease registries, including one a new one for autism."

Cuts

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his words and actions have shown, he despises Americans with disabilities.     And now, with RFK Jr. at HHS and Lindon McMahon at Education, his administration is in a position to harm them.

Julia Métraux at Mother Jones:

On Wednesday, a leaked draft Health and Human Services budget document revealed, among other sweeping cuts to health- and disability-related services, that Secretary Robert F. Kennedy Jr.’s department plans to defund protection and advocacy services for people with developmental disabilities—including autistic people, about whom Kennedy also spreads harmful disinformation. The budget document is a proposal, pending official release and eventually congressional approval; it’s also unclear whether suggested cuts originate with Kennedy’s HHS or Project 2025 architect Russell Vought’s Office of Management and Budget.

Federal funding for nongovernmental organizations to provide legal and advocacy services to people with developmental disabilities started in 1978 with the Developmentally Disabled Assistance and Bill of Rights Act. There are now 57 protection and advocacy agencies—one in every state, every territory, and in Washington, DC—that work to enforce the rights of people with developmental disabilities, those with mental health conditions, and other disabilities. The agencies, known as P&As, are overseen by HHS’s Administration for Community Living—which is being dismantled.

“What they’ve outlined here is eliminating almost all of the disability infrastructure in this country providing for services, supports, [and] research across the board to disabled people,” said Kate Caldwell, director of research and policy at Northwestern University’s Center for Racial and Disability Justice. Protection and advocacy agencies, Caldwell explains, are granted what’s called “access authority,” powers that allow them to independently investigate reports of abuse in facilities and community settings.

RFK Is Gathering Private Data on Autistic People

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. 

In light of the Trump administration's threats to privacy, this story is most disturbing:

Alexander Tin at CBS:

The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday.

The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.

"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain," he said in a presentation to the agency's advisers.

Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.

The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data, Bhattacharya said.

Help me understand how these lunatics who spent years fighting me on gun safety & used the idea of a government registry to create fear, now believe in a government registry to track people with autism. Everything they say is a lie, & everything they do is designed to hurt… https://t.co/G2seepJj15

— Fred Guttenberg (@fred_guttenberg) April 22, 2025

Examples of Police Shootings

 In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people, they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant. Training could help.

The killing of Victor Perez is just one example.

Deon J. Hampton at NBC:

For many advocates, Perez’s killing called to mind other examples of young people with autism who have been killed by police. Ryan Gainer, 15, was killed in March 2024 after charging toward a San Bernardino County sheriff’s deputy while holding a 5-foot-long garden tool.

Deputies were responding to a 911 call from the home that the teen had been “actively assaulting family members” and damaging property.

After the shooting, San Bernardino County Sheriff Shannon Dicus said in a statement, “Our social safety net for those experiencing mental illness needs to be strengthened.”

In February, Chase de Balinhard, a 15-year-old with autism, was killed by police in Vancouver, Canada, when they responded to an emergency call about an armed person in distress. Police saw the child holding a gun; it was later determined that he was carrying a pellet gun.

Eric Parsa, 16, was killed when sheriff’s deputies in Louisiana, responding to the teen’s mental crisis at a shopping center, pinned him down for nine minutes in 2020.

An officer sat on the teen’s rear end for about seven minutes, after which another deputy took his place. Eventually, seven deputies were “sitting on, handcuffing, shackling, holding down, or standing by E.P. as he was restrained and held face down on his stomach against the hard surface of the parking lot,” the station reported citing a lawsuit filed by the family.