Rotenberg Update May 2025

 In The Politics of Autism, I write:

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others.

Rachel Nostrant at NYT:

A coalition of doctors, lawmakers and advocates for people with autism has spent more than a decade trying to ban a medical device that is used to deliver painful electric jolts to people with severe neurodevelopmental disabilities.

Last year, a federal ban on the devices finally seemed imminent. But the upheaval sweeping the federal government during the Trump administration’s early months could further delay a resolution, allowing continued use of the controversial devices.

Wide-ranging cutbacks have been announced at federal health agencies, including the Food and Drug Administration, whose medical devices section had been working on the lengthy and convoluted process of implementing a ban.

Regulators determined that the jolts, delivered through electrodes strapped to a patient’s arms and legs, caused long-term harm and should no longer be used. Clinicians and relatives of residents at a treatment facility outside Boston defend the use of the devices, calling them a last resort for some of the facility’s most extreme cases.

The uncertainty over the devices’ fate has been compounded by President Trump’s chief health official, Robert F. Kennedy Jr., who has falsely linked autism with childhood vaccines. He recently called autism a preventable epidemic that destroys families and prevents people from living a full life, a characterization described as dehumanizing by many autistic people.

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

A May 7 release from Illinois Governor JB Pritzker:

Today, Governor JB Pritzker signed Executive Order 2025-02, affirming Illinois’ commitment to the civil rights, human rights, and data privacy of autistic residents. The order protects individuals from unauthorized data collection and sharing by state agencies and ensures that autism-related information is handled only when necessary and with informed consent. The order comes in response to rising national concerns about efforts to create federal autism registries or databases without clear legal safeguards or accountability.

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” said Governor JB Pritzker. “As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.”

“We are rejecting stigma and standing with families, educators, and self-advocates across Illinois,” said Lieutenant Governor Juliana Stratton. “This order reinforces our belief that neurodiversity is a strength and that civil rights must evolve to meet emerging challenges in data and privacy.”

In February, Trump’s Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. incorrectly referred to autism as an “epidemic,” a stigmatizing narrative condemned by leading health experts and advocacy groups across the United States. Secretary Kennedy has threatened to create an autism database though the HHS, sparking outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.

Under this Executive Order, state agencies may not collect or disclose personally identifiable autism-related data unless it is required for care, legal compliance, or program eligibility—and must always follow strict privacy and data minimization rules. Contractors, vendors, and grantees who work with state agencies are also covered by this executive order, and shall not collect, store, or disclose autism-related data. All disclosures must be limited to the minimum amount of information necessary to meet the legal requirement, and should be anonymized where allowed and practicable.

Illinois now becomes one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity.

“This is a strong, timely safeguard. As new threats emerge to the rights of people with disabilities, Illinois is showing what leadership looks like—proactive, principled, and inclusive,” said Representative Natalie Manley (D-Joliet).

“This is a win for privacy, inclusion, and progress,” said Stephanie Brown, Executive Director of the Southern Illinois Autism Society. “We’re grateful the Governor is listening to the autism community and taking concrete action.”

“Too often, policies affecting the disability community are made without us" said Karen Tamley, President and CEO of Access Living, a service and advocacy center run and led by disabled people in Chicago. "We must work to remove societal barriers and protect disability rights. Today, Illinois is taking an important step to protect the privacy of autistic people in our state."

“As the lead agency for The Autism Program of Illinois, a statewide network built by Hope to serve thousands of children and families, we’ve long upheld the principle that private health information must never be shared without informed consent,” said Clint Paul, CEO of Hope. “For more than six decades, Hope has championed the rights of individuals with autism—through care, education, and advocacy. We commend Governor Pritzker’s executive order for aligning with our values: protecting privacy, rejecting stigma, and affirming that every person deserves to be treated with dignity and respect.”

"At a time when certain federal officials are sharing dangerous misinformation about autistic people, and when members of our community are understandably concerned about whether the federal government has our best interests are heart, it is deeply gratifying to see Illinois affirming the value of our lives, affirming that autism is not an epidemic, and taking concrete action to protect our privacy and ensure personally identifiable information about us does not fall into the wrong hands,” said Colin Killick, Executive Director of Autistic Self Advocacy Network.

“We are thankful to Governor Pritzker and his cabinet for taking this strong stand and action to protect our rights to consent and be heard about decisions that threaten the progress made by advocates, family members, educators, legislators, and other champions serving the disability community,” said Kimberly L. Johnson, Chicagoland Autism Connection. “People living with autism and their family members are not just numbers in a research project! ​ Nothing about us, without us!

"As a mother of a ten-year-old on the spectrum and Executive Director of The Arc of Illinois, I’m grateful for this bold step to protect the rights and dignity of autistic individuals,” said Samantha M Alloway, Executive Director at The Arc of Illinois. “At a time when fear and misinformation threaten hard-won progress, Illinois is choosing inclusion, consent, and civil rights. Our voices are being heard.”

“My son is deserving of the same rights to medical and personal privacy as anyone else in this country, even more so in today’s climate. This order is a huge relief for families like mine,” said Mike Baker, a Schaumburg advocate and father of a teenager with autism. “We want our children to have equal rights—not be treated like data points or monitored without cause. His privacy is worth our protection.”

This executive order builds on a rich history of disability rights advocacy in Illinois. Just last year, Governor JB Pritzker signed the bipartisan Dignity in Pay Act, which will eliminate subminimum wage and expand employment opportunities for people with disabilities across Illinois. Additional efforts from the Pritzker administration to protect Illinoisans with disabilities include banning discrimination in housing selection based on non-employment income such as disability payments, and expanding accommodations for people with disabilities seeking to attend legislative meetings, hearings, and other government events at the Illinois Capitol Complex. Funding for disability services and supports have also reached record levels during Governor Pritzker’s time in office.

The Threat to IDEA

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.

Pepper Stetler at NYT:

Congress passed IDEA, then called the Education for All Handicapped Children Act, in 1975 to guarantee that every child with a disability received a free and appropriate public education in the least restrictive environment. The Department of Education requires states to monitor how districts use the funding for disability-related services like specialized instruction, teacher training, speech and physical therapy, communication devices and classroom support staff. Oversight of a program as complicated as IDEA is challenging, but it has aimed to ensure that states are doing the right thing by providing the most inclusive education possible.

To receive this funding, states are required to submit annual performance reports. The U.S. Department of Education uses 18 indicators to assess each state’s compliance with IDEA, including graduation and dropout rates, postschool outcomes, parent involvement and the percentage of time students spend in a classroom with nondisabled peers. Based on those metrics, the Office of Special Education Programs evaluated whether states were meeting IDEA’s requirements.

But the 2026 budget proposes consolidating seven IDEA programs and using a “simplified funding program,” which, while vague, suggests that the administration might be aiming to send the money to the states as block grants. This would probably allow school districts to use that money at their discretion. Acting on such changes to IDEA funding would require Congress to amend the law. The proposed restructuring could also reduce the federal government’s power to intervene when states do not fulfill their responsibility under the law. Without more robust federal oversight, enforcement on the local level would continue to be uneven.

Without a fully functioning Department of Education, states will not be held accountable for meeting even the minimum requirements of IDEA, and this landmark piece of legislation risks becoming essentially toothless, save for civil litigation. We will see an erosion of the promise of a free and appropriate public education for students with disabilities and fewer ways for parents and advocates to do anything about it.

Autism and Rural Health Care

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges can be especially daunting for those living in rural areas.

 Zhang, E., Alduraidi, W., Snyder, M., Kaiser, E., Hunley, S., Davis, A., Nelson, E.-L., & Cheak-Zamora, N. (2025). Pilot rural–urban comparison of health care experiences among autistic adolescents and young adults. Autism, 0(0). https://doi.org/10.1177/13623613251337506.

Lay abstract

Health care can be especially challenging for young autistic people, particularly when they move from child to adult health care. Our pilot study looked at whether the health care experiences are similar or different for autistic young people living in rural areas versus urban areas. We surveyed 180 autistic people aged 14–25 years about their health care experiences, including 96 from urban areas and 84 from rural areas. The survey asked about their experiences in finding providers, getting appointments, working with providers, and how well their providers understood autism. The results showed that rural young autistic people face some unique challenges. They often had to travel farther to find providers. They were more likely to work with one provider and report that their providers did not understand autism well compared to urban young autistic people, who often could choose between different providers. Interestingly, both rural and urban participants felt similarly about how well they could talk with their providers once they started working with them. Dental care stood out as particularly challenging among different health care services—rural participants had trouble finding dentists who accepted their insurance, while urban participants were more likely to have no dental insurance at all. These findings highlight important areas for improvement. Rural communities need more autism-trained providers and better access to nearby health services. In urban areas, addressing gaps in insurance coverage is critical. Together, we should improve care for all young autistic people, no matter where they live.

Disability Representation on TV

In The Politics of Autism, I discuss depictions of ASD in popular culture.   With some notable exceptions, the story is not a pleasant one.

"The State of Disability Representation on Television: An Analysis of Scripted TV Series from 2016-2023."

The Ruderman Family Foundation, in collaboration with the Geena Davis Institute, has released a white paper analyzing disability representation in 350 scripted TV series from 2016 to 2023. The study reveals that nearly 80% of characters with disabilities are inauthentically cast, with overall representation remaining disproportionately low at just 3.9%, despite nearly 30% of the U.S. population identifying as disabled. Authentic casting has fluctuated without a clear upward trend, and disability representation lacks diversity, with most characters portrayed as white. The report calls for industry-wide changes, including increasing opportunities for creators with disabilities, implementing authentic casting, and normalizing disability in storytelling.

1001: A Measles Odyssey

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. 

Mary Kekatos at ABC:

The U.S. has surpassed 1,000 measles cases for the first time in five years, according to new data from the Centers for Disease Control and Prevention (CDC) published Friday.

A total of 1,001 cases have been confirmed in 30 states including Alaska, Arkansas, California, Colorado, Florida, Georgia, Hawaii, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maryland, Michigan, Minnesota, Missouri, Montana, New Jersey, New Mexico, New York, North Dakota, Ohio, Oklahoma, Pennsylvania, Rhode Island, Tennessee, Texas, Vermont, Virginia and Washington.

The last time the U.S. recorded more than 1,000 cases occurred in 2019, when there were 1,274 confirmed infections over the course of a year, CDC data shows.

Database of Medicare and Medicaid Patients

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.

Berkeley Lovelace Jr., Erika Edwards and Akshay Syal, M.D. at NBC:

Autism experts and advocates expressed alarm after the Department of Health and Human Services said Wednesday it intends to create a database of enrolled Medicare and Medicaid patients to support a study aimed at identifying the “root causes” of autism.

Under the leadership of HHS Secretary Robert F. Kennedy Jr., the National Institutes of Health and the Centers for Medicare and Medicaid Services will partner up to build the database, using insurance claims data, electronic medical records and wearable technology, like smartwatches.
...

In a news release, the agency said researchers would focus on autism diagnosis trends, outcomes from medical and behavior therapies, access to care and disparities by demographics and geography, and health care costs.

...

There’s a “lack of clarity around how the data will be collected, how it will be shared, maintained, and how we know it’s going to be accurate,” said Alison Singer, president of the Autism Science Foundation, a nonprofit group that helps to fund evidence-based autism research.

Singer said her team has been inundated with calls and emails from people in the autism community concerned over the lack of transparency from federal health officials about how their private medical data would be obtained and managed.

The database project doesn’t include input from the autism community and overlooks well-established genetic links to the disorder, experts say.

“We’ve had expert scientists who have been studying this issue for 20 years,” Singer said. “If there were one environmental toxin, I think we would have found it.”

...

Zoe Gross, director of advocacy for the Autistic Self Advocacy Network, said, “None of us have been consulted on this. Under previous administrations, both Democratic and Republican, we have had more contact with HHS and more involvement in major projects involving autism.”

“Had we been able to give input into this, we would have suggested more clarity and different research aids,” Gross said.

DOGE Firings

 In The Politics of Autism, I discuss the employment of people on the autism spectrum.

KENYA HUNTER and FATIMA HUSSEIN at AP:

For decades, the federal government has positioned itself as being committed to inclusive hiring and long-term retention across agencies. But as mass layoffs ripple through the federal workforce under President Donald Trump’s Republican administration, disabled employees are among those being let go.

Amid the firings, rollbacks of accommodation guidance for businesses and skepticism of disability inclusion practices, advocates and experts wonder if the government’s status as a “model employer” will hold true.

Trump has said he ended diversity, equity and inclusion programs in the government because people should be hired based on work quality and merit alone.

However, under Schedule A, candidates already have to be qualified for the position with or without an accommodation. They don’t get a job solely because they have a disability.

A Non-Registry 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.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

Melody Schreider at The Guardian:

While the US Department of Health and Human Services (HHS) denies it’s a registry, the agency did confirm a sweeping database of autistic people will power a $50m study on autism. The health secretary, Robert F Kennedy Jr, said last week that he plans to announce results from the study within months.

A petition against the registry gained thousands of signatures in a single day, jumping from 2,500 to nearly 35,000 signatures within 24 hours.

“I’m a quiet person who likes to just be in the background,” said first-time petition creator Ryan Smith, a parent of two neurodiverse children living in Idaho. He also didn’t want to make himself a target.

“But I feel really, really, really strongly about this, and I have to speak up for my kids who can’t speak for themselves.”

The petition gathered nearly 50,000 names before declaring victory when HHS seemed to walk back on the plan.

“We are not creating an autism registry,” an HHS spokesperson said.

But the difference seems to be in the name. The agency is creating a “real-world data platform” to “link existing datasets” for the research into causes of and treatments for autism, the spokesperson confirmed.

“They’re saying it’s not an autism registry, but it sounds like they kind of just changed the name of it,” said Amy Marschall, an autistic psychologist who has long objected to mandatory autism registries.

...

“And at worst, I worry that we’re on a slippery slope to eugenics,” Smith said. “My mind immediately goes to history and things that happened in Nazi Germany. That’s extreme, but it feels like a possibility.” Disabled people were the first to be targeted then, he pointed out.

Opponents also wonder about privacy and security measures, which have not been detailed by health agencies, and how individuals’ information could be used against them.

“Are you going to use this as an excuse to take away my rights, to hold me against my will, to prevent me from having children, to take away my right to manage my own finances?” Marschall asked.

Trump Slashes Autism Research

 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.   

To lead a "study" of autism causation, RFK Jr. has named an antivaxxer who is neither a scientist nor a physician.  Meanwhile, the administration is slashing actual autism research.

Alana Samuels at Time:

“Funding for autism research is actually disappearing at a time when we see the director of HHS talking a lot about autism as though they think it is important,” says Micheal Paige Sandbank, an autism researcher at the University of North Carolina at Chapel Hill. “Behind the scenes, they are taking a hammer to the whole apparatus for autism research.”

...

A big funder of autism research has historically been the DOE’s Institute of Education Sciences, says Sandbank. But the institute, which has a budget of $800 million, was gutted in the Trump Administration’s layoffs, with only a skeleton staff remaining. Autism research at the institute focused on developing and evaluating school-based interventions to improve outcomes for students with autism.

...

Another canceled grant from the NSF funded autism programs in schools and universities. The Frist Center for Autism and Innovation at Vanderbilt University lost $7.7 million in funding because its grant application, which was initially approved, included the terms “inclusion” and “accessibility,” according to Jessica Schonhut-Stasik, who runs communications for the Frist Center and was also a student in the program. The program offered grants for neurodivergent students or people studying neurodivergent students, says Schonhut-Stasik. The grant also sponsored a summer summit for autistic students, says Schonhut-Stasik, who is herself autistic. “This is just so deeply sad,” she says. “To be given this money, to be told, ‘Here is the money to pursue your dreams,’ is just so big for any autistic person,” she says.

...DOD also funded a lot of autism research, Sandbank says, but a reorganization there has left future projects in jeopardy. The DOD funding was through something called Congressionally Directed Medical Research Programs. In each of the last five years, the Autism Research Program under that bucket has received $15 million dollars, according to DOD press releases. The DOD studies autism in part because it affects children of military families.

In 2025, though, a number of the same research programs received funding as they had in the past, including breast cancer research. But autism was not among the programs listed to receive funding in 2025 announcements. Because autism is not included, Sandbank, who was going to submit a grant for this funding, no longer plans to, she says.
...
NIH is also a huge funder of autism research. But shifting priorities there have ended or delayed some of these projects, says David Mandell, a professor of psychiatry at the University of Pennsylvania who studies autism. The Trump Administration has begun to review and cancel grants that have what it deems diversity, equity, or inclusion terms in them because of a Trump executive order seeking to end what it called “radical and wasteful government DEI programs and preferencing.” Grant applicants are being told, Mandell says, that their research no longer meets “agency priorities.” One public HHS document shows at least two autism grants canceled in the sweep: a project looking at biomarkers of late autism diagnosis in female and gender-diverse people, and one preventing suicide among autistic adults.

Ominous Budget Language About IDEA

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.

The Council for Exceptional Children on Trump's "skinny budget":

The non-binding budget informs Congress about the President’s priorities for federal agencies. It proposes to level-fund the Individuals with Disabilities Education Act (IDEA) at its current funding level. However, it proposes the establishment of a “Special Education Simplified Funding Program” within IDEA that would consolidate seven unspecified IDEA programs. The White House explains, “The consolidation furthers the Administration’s goal of limiting the Federal role in education by reducing the number of programs at ED, the number of staff needed to administer them, and the administrative burden on States so more dollars go to students instead of bureaucrats.” However, with few additional details and no specifications about impacted programs, it is unclear how IDEA funding will be prioritized and whether any IDEA competitive grant programs will be preserved.

If Congress follows this recommendation, it could make Part B grants to states (ages 5-21), Part C funds for infants and toddlers, and Part D funds for personnel, parent training, research, and technical assistance (accessible materials, technology, etc.) in jeopardy and at the complete discretion of the Administration. Congress will need to determine how closely to follow this budget proposal as they craft their bills for Fiscal Year 2026. A more detailed budget is expected to be forthcoming from the White House.

Coalition of Autism Scientists

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.

A release from the Coalition of Autism Scientists:

The newly formed Coalition of Autism Scientists today issued a statement in response to remarks and actions taken by Robert F. Kennedy, Jr., Secretary of the U.S. Department of Health and Human Services (HHS) regarding the study of autism. Led by Helen Tager-Flusberg, Ph.D., Professor Emerita, Department of Psychological & Brain Sciences, Director of the Center for Autism Research, Boston University, this growing group of experienced research scientists from across the United States came together to reject Mr. Kennedy’s false narrative about the incidence and causes of autism, instead urging HHS to focus on established, research approaches that already inform the global understanding of autism.

Dr. Tager-Flusberg said, “The Coalition of Autism Scientists came together to demand respect for autism research. Instead of focusing on questions that have been asked and answered, limited and valuable research dollars must focus on what we don’t yet know about autism so that we can meet the urgent needs of autism individuals and their families.”

Full Statement from the Coalition of Autism Scientists

“For more than three decades, the National Institutes of Health has invested substantial resources into research to advance knowledge about autism spectrum disorder. As scientists dedicated to this venture, we have witnessed many remarkable achievements in our field revealing the complexity of autism. These include: discovery of hundreds of genes associated with autism; identification of environmental factors that may interact with genetic predisposition; knowledge about differences in brain architecture and function; documenting the significant prevalence rates across the globe; divergent presentations and highly variable outcomes; early development of brain and behavioral signs in infants; and the development and evaluation of innovative interventions that improve autism symptoms and enhance quality of life for individuals and their families.

Considering these advances, we were deeply troubled to hear the Secretary of Health & Human Services dismiss past research, downplay the causal role of genes, and portray autistic people in ways that counter our experiences and demean their value to society. We are unified in our commitment to conduct the highest quality research and build mutual respect and trust with the public. This trust is seriously threatened by the Secretary’s interpretation of the rising prevalence rates and his plans to carry out a study that will deliver findings within a few months on an environmental toxin that causes autism. We fully support genuine advances in the field, so we urge the Secretary to register the planned study protocol, provide time for public comment, include independent data analysts, and make the data available to the scientific community. Following these widely accepted scientific practices that ensure research integrity, will allow the planned study to build on the strong foundation of prior research and help guide future work to unravel the causes of this complex disorder and lead to new approaches in how we support individuals and their families.”

A full list of signatories is available at this link: Coalition of Autism Scientists Signatories List

About the Coalition of Autism Scientists

The Coalition of Autism Scientists formed in 2025 and is comprised of the leading autism researchers across the United States. It is led by Helen Tager-Flusberg, Ph.D., Professor Emerita, Department of Psychological & Brain Sciences, Director of the Center for Autism Research, Boston University. Shortly, the Coalition of Autism Scientists will launch a website at https://coalitionofautismscientists.org

RFK and Divisions in the Autism Community

In The Politics of Autism, I discuss divisions and factions within the autism community.

To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests.  In autism politics, the factional disagreements are diverse and deep.    Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them.  For people with autism, the issue involves their very identity.  

  Autism politics is like faculty politics on crystal meth.

Chelsea Cirruzzo and Lauren Gardner at Politico:

Robert F. Kennedy Jr.’s pledge to investigate autism’s “root cause” has split advocates for people with the condition: Some, like Kennedy, want to know what’s causing it, while prominent groups think his search could do more harm than good.

Kennedy’s grim depiction of the most profound cases of autism — many “will never use a toilet unassisted,” he said in April — sparked condemnation from several groups devoted to championing autistic people. They said his remarks perpetuate stigmas associated with a condition that has a broad spectrum of manifestations — and, coupled with his well-known vaccine skepticism, color any attempt by the agency he leads, the Department of Health and Human Services, to conduct further autism research.

But others who say they speak for people with severe autism were heartened that Kennedy is promising to devote HHS’s resources to help them as autism diagnosis rates continue to climb.

“America has a big problem, and we have to face up to it,” said one of them, Jill Escher, president of the National Council on Severe Autism.

...

Her organization also took issue with those, like the Disability Rights Education and Defense Fund and experts quoted in a New York Times op-ed, who said they thought Kennedy’s research plan was rooted in eugenics — the idea that science could be harnessed to prevent autistic people from being born. In a statement, the National Council on Severe Autism said it “categorically” rejected the claim.

That group and others, like the Autism Science Foundation and the Profound Autism Alliance, believe autism’s rise — the most recent Centers for Disease Control and Prevention data says 1 in 31 eight-year-old children has the condition — underscores the need to continue studying potential causes so that people can better understand risk factors and develop treatments for individuals with more severe forms of autism.

The Autism Science Foundation chose not to endorse the statement of its peer groups condemning Kennedy, President Alison Singer told POLITICO, because “there was a focus in that letter that we shouldn’t be focusing science on prevention, and we believe strongly that we should.”

...

Representatives of the Autism Society of America, the Autistic Self Advocacy Network, and Autism Speaks said their organizations have yet to get a meeting with Kennedy or other HHS officials.