Tag Archives: Autism

Trump administration seeks to weaken disabled Americans’ access to community-based services

19 Jun

When I was young, people like my kid were institutionalized. Access to community, either in their residence or their daily activities, was limited. Which is a nice way of saying, a lot of people never saw the outside of an institution.

I don’t want to go back. I don’t want to think that after I am gone, the state will warehouse my kid. My kid is a human with rights and dignity.

It looks like the Trump administration would like to take us a step closer to the bad old days. The Trump Department of Justice (DOJ) has issued a memo that states we’ve been interpreting the ADA wrong this whole time. It would weaken the legal protections that have helped people with disabilities live in their communities rather than in institutions.

While this memo isn’t binding, it does tell us (a) that the Trump administration may move forward on more binding actions and (b) they aren’t going to defend the rights of people with disabilities strongly.

Let’s look at this a bit deeper. Starting with a bit of history.

One example of the old approach is a story from 1972 in the New York Times: Forurn School at Waldwick Offers ‘Attic Children’ Hope. While the story focuses on school-aged children, the term “attic children” makes the point clear.

The “attic children”—called so because they often have been kept hidden, damaged to life without hope—are finding new hope.

They are children with severe emotional disturbances, childhood schizophrenia, or autism.

Two reasons why we no longer have big institutions and “attic” people is the Americans with Disabilities Act (the ADA) and a Supreme Court decision based on it. The term “landmark decision” may be over used sometimes, but not in the case of the Supreme Court’s landmark decision Olmsted v. L.C.. The Olmstead decision established that unjustified institutional isolation can be disability discrimination and strongly favored providing services in community settings when certain conditions are met.

The Olmsted decision requires states to provide services in community settings. The requirement isn’t absolute. Community based services are are the default when:

(1) treatment professionals determine community placement is appropriate,

(2) the individual does not oppose the move,

and (3) the placement can be reasonably accommodated given the state’s available resources and responsibilities to others. 

The Trump administration would like to change that. The Trump Department of Justice has published a memo: Application of the Rehabilitation Act and Americans with Disabilities Act to State Institutionalization of Patients with Severe Mental Illness or Disabilities. In it, they argue:

Neither §504 of the Rehabilitation Act nor Title II of the ADA imposes a federal “integration mandate” requiring states to provide treatment in the most integrated setting possible, and federal agencies (DOJ/HHS) lack authority to impose such a mandate through regulation.

Basically, the memo says the Supreme Court only held that “unjustified institutional isolation” can be discrimination, not that states are required to place people in the most integrated setting possible.

Looking only to those aspects of the opinion that represent the law, we conclude that Olmstead did not hold that Title II requires maximal integration for patients with mental disabilities receiving state treatment. Rather, it held only that a state cannot institutionalize such patients without justification. See 527 U.S. at 600 (majority opinion). What counts as adequate justification remains an open question.

Let’s repeat that last line for emphasis, shall we? What counts as adequate justification remains an open question. Access to community can be taken away “with justification”, but that justification is “an open question”.

When I am on my deathbed, I don’t want to be thinking my kid’s freedom can be taken away based on criteria that are “an open question”. More to the point, I don’t want to think the Department of Justice will sit on their hands if my state makes that move. I want my kid’s rights defended.

I hesitated to write this next section.

Years ago, I grew tired of hearing warnings about what could happen if anti-vaccine activists and grievance-parent groups gained political influence. We were told not to exaggerate the danger.

But we’re no longer talking about hypothetical futures.

Those movements have gained influence, and one of the long-standing concerns was that their dehumanizing rhetoric about people with disabilities would eventually lead to a rollback of disability rights.

That possibility no longer feels theoretical. We are here now. And yes, I believe those groups bear some responsibility.

But this post is not about assigning blame. It’s about being prepared to act.

Some states may decide to adopt the approach outlined in this memo. When that happens, people will need to push back. Most, maybe all, readers of this blog will never be the named plaintiff in a court case. But we can still support the people who are.

When those cases arise, make your voice heard.

If organizations are fighting to defend community integration, support them. If your state proposes changes that would weaken disability rights, speak up. If you can donate, donate.

Most importantly, do not accept this reinterpretation as inevitable.

We have spent decades moving away from the idea that people with disabilities should be hidden from society.

We cannot go back. We will not go back.

By Matt Carey

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Dramatic Cuts in New NIH Research Funding Across the Board

12 Jun

NIH autism research funding has collapsed since Mr. Kennedy became HHS Secretary. I wrote about this in my open letter to the IACC. Then I got curious: are the cuts limited to autism, or is this happening across NIH? The answer: it’s everywhere, and it’s worse than I expected.

Below is a graph I made after using NIH RePORTER. I checked the number and funding amount of new grants from NIH. Note that I pro-rated the 2026 information since the fiscal year goes until Sept 30. Funding for ongoing grants is one thing, new grants tells us what the future will look like and what the priorities of this Secretary are.

Let’s put this simply: this Secretary does not value research. NIH is funding new projects at 25% of the level under the previous administration. Sixty percent fewer grants. Seventy-five percent less funding.

Take NIMH (the National Institute for Mental Health), which is a primary source for autism research. Grants are down over 50% in number and more than 75% in funding.

Several CDC centers that previously appeared in NIH Reporter as grant-funding entities show zero new NIH grants in FY2026. Whether these centers have been formally eliminated, absorbed into HHS’s new structure, or simply lost their grant-making authority isn’t entirely clear — but the result is the same: no new research from these centers through NIH.

These sites had projects listed in 2025, but not in 2026.

CLC — Clinical Center (NIH’s research hospital in Bethesda)
NIOSH — National Institute for Occupational Safety and Health (part of CDC)
NCCDPHP — National Center for Chronic Disease Prevention and Health Promotion (CDC)
ATSDR — Agency for Toxic Substances and Disease Registry (HHS, administered alongside CDC)
NCEZID — National Center for Emerging and Zoonotic Infectious Diseases (CDC)
GHC — Global Health Center (CDC)
NCIRD — National Center for Immunization and Respiratory Diseases (CDC)
AHRQ — Agency for Healthcare Research and Quality (HHS)

Other non-NIH centers had their NIH funding cut dramatically NCIPC (the National Center for Injury Prevention and Control at CDC) is down to nearly zero.

If you follow Mr. Kennedy’s social media feed, you will see that he wants to be seen as a champion of Native Americans. Rationalize that against the fact that he cut about 90% of new grants for the NIMHD: The National Institute for Minority Health and Health Disparities. Look at NIMHD’s homepage today:

My guess? Research into health disparities among minorities, even Native Americans whom Mr. Kennedy purports to champion, is woke. Am I surprised that Mr. Kennedy is willing to sacrifice his supposed core beliefs to please President Trump? Not at all. Mr. Kennedy is a politician. Always has been.

Research benefits Americans. Plain and simple. We can talk about blockbuster GLP-1’s or other in-the-news medical advances. I’ll just say simply: someone I love would be dead now if it weren’t for epilepsy drugs. I don’t want progress to stop.

Many of you read this blog because autism affects your life. The medical comorbidities our community faces — epilepsy, sleep disorders, mental health — are exactly the kinds of conditions that need research to improve. When NIH stops funding new research, those of us who depend on better medicine pay the price. Contact your senators and representatives. Tell them: find a way to make Mr. Kennedy fund the research.

-By Matt Carey

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Open letter to the IACC: Autism research is stalled. Get secretary Kennedy to make new autism research grants.

11 Jun

Secretary Kennedy has cut back on autism research, and you can act. You should act. You must act.

Here are data from NIH Reporter on new NIH autism grants by fiscal year. I pro-rated the results from 2026, since the fiscal year ends in September. This graph shows only those grants which are new in each fiscal year, not those which are funding ongoing projects.

New grants are down 60% from 2025.  Funding is down 80%.

I am going to ask you to read that again. An 80% drop in funding for new research grants.

You should be asking yourself about continuing grants. Continuing grants are also down. Overall, total NIH autism grants and funding are down by about half from 2025. Would you have been angry if such a cut was made under a different secretary? Not only is this a big cut overall, but this is also a Secretary who chooses to just not spend authorized funds. If you would have been silent under a different Secretary, then this letter isn’t for you. If you would have spoken up — you have to speak up now.

Autism CARES authorizes about $2B in research funding. Think about that. $2B earmarked for autism research. You may not agree with where the priorities have been placed. But you are in danger of being the Committee that not only allows HHS to not spend those funds, but also to see Autism CARES not be renewed.

Renewal of the ACT is far from guaranteed. If you look at past IACC meetings, you will find multiple instances where Tom Insel commented that congress does not like “single disease” bills. Renewal every four years is a real fight.

The Autism CARES Act is up for renewal in 2029, the same time your terms expire. Ask yourself, would congress vote to renew the Act if the funds they authorize aren’t being spent? 

We should address the elephant in the room. Congress is already going to be disinclined to renew the Act if it gives a platform to a Committee that promotes an anti-vaccine and pseudo-science agenda. You may feel validated with the appointment of Mr. Kennedy. But you haven’t convinced congress and you are unlikely to do so in the next couple of years. Moreover, are you willing to bet $2B that could help the autism communities on making your case to Congress?

In short, you have two big problems. First, your agenda is, to be polite, unpopular. Second, you are overseeing not the coordination of autism research, but the lack of autism research. I suggest to you that you focus on getting new autism research funded. Besides helping to ensure that Autism CARES gets renewed, it is your job. 

Many of you have worked with Mr. Kennedy. I wouldn’t be surprised if you have his email and his phone number. You may be the Committee in history that has the best chance to be heard by the Secretary. If he doesn’t hear from you on this, you have no excuse.

You also have the official avenues to make yourselves heard. The Committee can draft a letter to the Secretary. You can make your voices heard by the NIH directors who are sitting with you and who can forward your views up the chain. But, for those of you who know Mr. Kennedy, you have to reach out and make him understand that refusing to fund autism research harms the very communities he has claimed to support for decades.

I once sat on the IACC. I know what it is like to feel the responsibility to the autism communities of ensuring that autism research funding is well spent and that the Federal commitment to autism research doesn’t fade.

Respectfully Submitted 

Matthew J. Carey

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Reportedly, Mark Blaxill is a CDC “Senior Advisor”. Remember, this is not The Onion.

28 Sep

How does one recapture trust in the public health system? I can tell you one way to make it worse. Put Mark Baxill to work at the CDC. Mr. Blaxill is a long time anti-vaccine activist who has done a lot of harm promoting the “vaccines cause autism” lie. We on this blog have been countering Mr. Blaxill’s misinformation for about two decades now.

According to Alt CDC, Mr. Blaxill now is in the Office of the Director. Once again: this is not The Onion. This is not April Fool’s day. This is life under Donald Trump and Robert Kennedy. Meritocracy is not a thing anymore. Fealty to the “vaccines are bad” campaign is. I’m open to counter arguments by those who feel Mr. Blaxill earned a spot at CDC. Go ahead. Point to his books and his papers, his writing on the Age of Autism blog and convince me he has the chops and, mostly, the integrity to serve as a public health “consultant” in what was once the premier public health agency in the world. I’m listening.

I don’t see Mr. Blaxill when I do a search on the HHS employee directory. But I am told he is a “senior advisor/consultant” reporting to Matt Buzzeli. Mr. Buzzelli is a political appointee, apparently assigned to CDC after the recent purge of qualified public health officials at CDC. So we have Mark Blaxill who, ignoring his anti-vaccine activism, is a businessman, and an apparently failed politician (he created his own political party which appears to have gone nowhere, and had a failed bid for a congressional seat). And he works for an attorney who “worked with the Family Office of Norm Miller to support the development of Interstate Batteries’ emerging retail and commercial operation.”

We’ve replaced people who were nonpolitical experts in their fields with these gentlemen. Feeling more confident about the CDC? Neither am I.

By Matt Carey

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Want the Nobel Prize for Warp Speed, Mr. Trump? Fire Kennedy.

6 Sep

The same people who might value your efforts with Operation Warp Speed will also be able to do the simple math in their heads that says Mr. Kennedy’s approach is going to kill people.

Mr. Trump, there is a lot of chatter about you wanting the Nobel Peace Prize. OK, I know you’ve publicly stated you don’t want it, but just in case that’s just you being modest, let’s assume you actually do.

Even Robert Kennedy, a man with few to no good words to offer on vaccines, stated publicly that he believes you should get the Prize. Which may make you think, “good guy, Bobby. He’s going to help me get that Prize!”

Well…not so much. You may be thinking that I’ll point out the fact that Mr. Kennedy, as Senator Cassidy pointed out, says things like, “the vaccine killed more people than COVID”. You may be thinking that I’ll point out that he is likely getting people to generate “gold-standard science” that will claim the vaccine doesn’t work and kills people. Which he probably is doing.

Nope. Here’s an even bigger point I want to make: Mr. Kennedy’s policies are taking America back to a time when children die of vaccine preventable diseases. For example, we just had a large outbreak of measles, and Mr. Kennedy’s response was so lackluster that it certainly was a factor in how long it lasted. Two American children died. Needlessly. I called that outbreak “large”. It is nothing compared to what is in store for America under Mr. Kennedy’s leadership. Florida is moving to removing vaccine mandates for schoolchildren. That will lead to larger outbreaks. And not just among children. Florida is a state with a large retiree population.

The same people who might value your efforts with Operation Warp Speed will also be able to do the simple math in their heads that says Mr. Kennedy’s approach is going to kill people.

My guess is that if Mr. Kennedy is already telling you in private: “Solving the ‘autism epidemic’ will be even bigger than Operation Warp Speed. They will have to give you the Nobel then.” He even has ‘studies’ by some really bad and unethical people he can use to support his idea that vaccines are the cause. And, no doubt, more are on the way from David Geier and others. This is one of those times you need advisors who are both competent and free to speak their mind. People who actually understand science which, frankly, Mr. Kennedy does not. Because he is playing with people’s lives. Children’s lives. And that’s a lot more important than the Nobel Prize.

I am the parent of a young autistic adult. My kid grew up during the time Mr. Kennedy has been running his campaign against vaccines. I am a scientist. A researcher. Not in medicine, but I understand the studies. Focus on that last–not in medicine. I have no conflicts of interest other than this topic is very important to me. I don’t want children to die because Mr. Kennedy used my kid as a weapon against vaccines. I just don’t want children to die needlessly. I have been speaking out to counter Mr. Kennedy for 20 years because I saw the danger he posed.

Mr. Trump, I think you don’t want children to die and that is probably a bigger motivation than the Prize. But, do the simple math. Anyone on the Peace Prize Committee who values public health to the point of considering you for your efforts with the COVID vaccine program will see the dangers your administration–with Robert Kennedy running HHS–poses.

Do it for the children. Do it for yourself. Fire Robert Kennedy.

By Matt Carey

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In light of the CDC attack, RFK Jr. should apologize for his language against vaccine researchers.

21 Aug

I will state this straight out–I believe the anti vaccine movement has put good people at risk for decades with their rhetoric. And I also believe Mr. Kennedy has contributed a great deal to this climate of hate. How much or how directly he may have influenced the gunman who opened fire at the CDC recently, I cannot say. But I can say that I believe Mr. Kennedy, who has used terms like “corrupt”, “criminal” and “poison children” when discussing a CDC researcher, should apologize for his language. It isn’t a matter of whether the language directly contributed to the shooting. He never should have made many of the comments that were a mainstay of his speeches over the years.

Let’s consider one specific event. Ten years ago Robert Kennedy attended an anti vaccine event called the CDCTruth rally. The rally was held in Atlanta, Georgia, home of the CDC. Mr. Kennedy singled out a researcher at CDC, calling them them “corrupt”, a “criminal”, “guilty of research fraud”, who injured people and suggested they “poison[ed] children”. Read his statement for yourself:

I’m going to say one last thing to you.  [CDC-Researcher], who runs the division, the vaccine division, and who orchestrated this corruption; [they are] a criminal and he committed scientific research fraud and [they are] guilty of injuring all of these people.  Now I’m saying that and I’m using [their] name*; and what I’m saying, if it’s untrue is an act of slander, and I want [them] to sue me.  And if [they] didn’t do it, [they] ought to sue me.  [They] ought to file a suit this afternoon and enjoin me from ever saying that again.  If somebody said that about me, I would sue them immediately and I’m saying to you, [CDC-Researcher], if you didn’t poison the children, you need to sue me right now and shut me up because what I’m saying to you is damaging to your career.  So let’s see what [they do] on Monday.  Thank you all very much.” 

That was ten years ago, why bring this up now? Because, as I noted above, a gunman killed a police officer in what was an apparent attempt to commit mass murder at the CDC recently (1 week after deadly shooting at CDC, some employees feel Trump and RFK Jr. have moved on). The attack appears to have been a motivated by the CDC’s actions with vaccines (Shooter attacked CDC headquarters to protest COVID-19 vaccines, authorities say).

When Mr. Kennedy spoke, it wasn’t about the COVID-19 vaccines. The pandemic hadn’t occurred yet. It was about the MMR vaccine. But, I will argue, it contributed to the climate of hatred towards vaccine researchers that persists to this day among his supporters. While I can’t say Mr. Kennedy’s words directly influenced the murderer, he never should have said them. They were irresponsible then and they should be retracted now.

We should address a few points as long as this topic has come up. First, as Medpage Today reports:

“There is no evidence that vaccination causes depression and suicidality,” Roy Perlis, MD, of Massachusetts General Hospital in Boston, told MedPage Today.

So, for those who have framed this as, “look at what vaccines did”: stop. You are setting the stage for the next attack.

Also, from the same article, “One study found that those with depression were more likely to endorse COVID vaccine falsehoods”.

Mr. Kennedy’s supporters can try to excuse his comments as, “reasonable people wouldn’t use words like these to justify violence.” Not everyone is reasonable. And you can’t just send out hateful words to reasonable people.

By Matt Carey

I suspect Mr. Kennedy will make moves that will dramatically reduce access to the MMR vaccine. Sooner rather than later. It will be a big mistake. That’s one of the big understatements ever made on this blog.

That said, here’s something to consider as an appendix to the article above. Mr. Kennedy made statements that, in his own words, are slander if not true. He was talking about the MMR vaccine which in his statements “poison[s] children”. Begs the question: why is it still approved? It is safe and effective and doesn’t cause autism. But why hasn’t Mr. Kennedy stopped its use?

Mr. Kennedy has been in charge of HHS–which ultimately has control over whether the MMR vaccine is approved for use–for six months. While he has done a lot to dismantle America’s vaccine program, and has moved very quickly, the MMR vaccine is still approved for use with American infants. Given Mr. Kennedy’s 2015 statements, one must ask why he didn’t immediately pull approval. Did Mr. Kennedy actually believe his rhetoric back in 2015 or was it indeed slander? Or, did he believe it then but doesn’t now? Is he moving slowly to keep his position of power? Wouldn’t that action, if the MMR vaccine were indeed poison (again, it is not), amount to sacrificing the kids getting the vaccine today for some “greater good”?

I have a hard time aligning Mr. Kennedy’s actions with his views.

* I redacted the researcher’s name and gender. Should be obvious that I think Mr. Kennedy put that researcher in danger and that I want don’t want to contribute to that effort.

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WSJ: Vaccine Opponent Hired by RFK Jr. Scours Official Records for Link to Autism

9 Jun

For years, I’ve hoped major news outlets would shine a light on figures like David and Mark Geier—key players in the anti-vaccine movement that has harmed autism communities for decades. Now that attention has come, but since it’s due to Robert Kennedy being the Secretary of HHS, I wish it hadn’t.

Last week, The Wall Street Journal reported that David Geier has been hired by Robert F. Kennedy Jr.. The article, by Liz Essley Whyte and Dominique Mosbergen, titled “Vaccine Opponent Hired by RFK Jr. Scours Official Records for Link to Autism”, highlights what appears to be Mr. Kennedy’s plan to reanalyze CDC vaccine data—seeking to link vaccines to autism and allege CDC corruption.

Geier is aiming to reanalyze the data used in the CDC thimerosal study to see if it supports a link between vaccines and autism, people familiar with the matter said. But he is also interested in proving the CDC is corrupt, the people added.

The article is relatively short and it’s better for you to read it for yourself than for me to summarize it. Instead let me discuss my opinions of Mr. Kennedy and his decision to hire Mr. Geier.

People like to point out David Geier’s lack of credentials. While true (he has a B.A. and left graduate school without completing a degree), I would argue it’s very much secondary to the fact that he has a track record. And his track record in vaccine-related research is poor at best. There’s no reason for Mr. Kennedy to involve him again—unless, that is, the goal is to confirm a preexisting belief that vaccines cause autism. Ironically, that’s the very kind of bias and “corruption” Mr. Kennedy has accused public health institutions of engaging in.

Mr. Kennedy has access to skilled epidemiologists. If he truly wanted transparency and scientific rigor, he could commission a well-documented, peer-reviewed study. Instead, he brought on David Geier. The WSJ reports:

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

Which is backwards. Don’t have the experienced, qualified researchers help the unqualified guy with a bias. If he wants a quality study done and wants someone to ensure transparency, have Mr. Geier observe the actual researchers.

Sadly, this assumes an ideal world where researchers at NIH aren’t under threat of losing their jobs, their pensions and all, if they tell a clearly vindictive administration what it doesn’t want to hear. We don’t live in that ideal world.

As the saying goes, judge a person by their actions, not their words. Mr. Kennedy’s decision suggests he’s more interested in validating long-held beliefs than uncovering scientific truth. For years, he’s built influence and wealth off the backs of families like mine—families with autistic children. For years, he’s ignored good scientific results and instead promoted junk. Like that generated by David Geier.

Before I go on and on and completely lose the point of this article (the new WSJ article: Vaccine Opponent Hired by RFK Jr. Scours Official Records for Link to Autism), let me make three points:

  1. I have been following Mr. Geier, Mr. Kennedy and the anti-vaccine movement for 19 years now.
  2. I am the parent of an autistic adult. I have skin in this game. If there were evidence that vaccines caused an autism epidemic, I’d be shouting it out.
  3. I am a Ph.D. researcher with decades of experience. I’d say my publication record is better than Mr. Geier’s but that is a terribly low bar. I am well respected in my field. Mr. Geier’s publications are an affront to good scientists everywhere.

If there were real evidence linking vaccines to an autism epidemic, I would be the first to speak up. But what we’re seeing now is not a search for truth. It’s a continuation of a harmful agenda, now backed by the highest levels of government.

By Matt Carey

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Robert F. Kennedy Jr. Didn’t See Autistic People—But They Were There

14 Apr

Kennedy wants us to believe that autism was vanishingly rare when he was young. Instead, he’s revealed something much simpler: he didn’t know what autism looked like.

Robert Kennedy Jr. often tells a story meant to bolster the idea that autism is a modern epidemic. When he was a teenager, he volunteered at the Wassaic State School in New York. His takeaway? He never saw anyone with autism. The implication is clear: autism must be new. An epidemic, and one caused by vaccines. But there’s a problem with his story: there were a lot of autistic people at Wassaic.

At best, Kennedy’s story reveals more about his own lack of awareness than it does about autism. Based on data from the California Department of Developmental Disabilities (CDDS)—data Kennedy himself has cited in various arguments—to support the idea that autistic people were indeed present in institutions like Wassaic in significant numbers during the time he volunteered there.

His revisionist anecdote is standard in the “autism epidemic” playbook. First, you take old prevalence studies at face value—as though diagnostic practices and awareness haven’t changed dramatically over the decades. In the 1970s, autism was estimated at around 3 in 10,000. Wassaic housed somewhere between 2,400 and 5,000 residents at the time. If you apply that (outdated) prevalence rate, you might expect only one or two autistic individuals in the entire institution.

You can be forgiven if you don’t see the logical flaw in that argument. Apparently, Mr. Kennedy cannot. The autism prevalence in a place like Wassaic would have been much higher than that in the general population. 3 in 10,000, even if it were an accurate autism prevalence, is not the number to use. Pretty obvious once it’s spelled out.

So let’s do what Kennedy doesn’t: look at the numbers. Let’s ask how many autistic people were at Wassaic.

I examined a historical dataset from the CDDS* and asked a simple question: for individuals born around the same time as Kennedy (and, thus, would be representative of the age of students at the “school”), how many are recognized as autistic compared to those with intellectual disability (ID)? The answer: about 1 in 20. Implicit in Mr. Kennedy’s logic is that many or most of these autistic people would have been at places like Wassaic.

So, if you are looking at a population of people with developmental disabilities in 1972, you’d expect one diagnosed autistic** for every 20 people with intellectual disability. That one person probably is both autistic and intellectually disabled. So, on average, every classroom group Mr. Kennedy would have seen would have a recognized autistic person. Or, to put it another way, ff Wassaic had 5000 residents, there’d be about 250 autistic people.

Kennedy states he didn’t see recognize anyone who was autistic at Wassaic. And why would he have understood the people he saw were autistic? He was about 18 years old. Even now, he’s not a doctor. He’s not trained in neurodevelopmental disorders. The idea that he could identify autism in a mid-century institutional setting, from his memories as a teenager, is implausible at best.

So Kennedy wasn’t seeing too few autistic people. They were there. He was simply unable to recognize them.

This isn’t a complicated scientific issue. It’s about context, data, and critical thinking—qualities Kennedy claims to value but rarely applies. And that matters, because his ignorance has consequences.

Kennedy uses the “autism epidemic” narrative to stoke vaccine fear. He’s spent two decades promoting misinformation that undermines public health. Today, people are dying of preventable diseases in places like Texas because of narratives like his.

But my reasons for writing this go beyond public health.

This matters because it hurts autistic people. When Kennedy claims that autistic individuals didn’t exist before, he erases generations of people who went undiagnosed and unsupported. It’s not just bad science—it’s dehumanizing.

If Kennedy wants to lead, he needs to start by recognizing the people he claims to care about.

By Matt Carey***

*Here’s a screenshot of the spreadsheet I got from CDDS. It is from 2015. I added a column with the ratio of consumers in the autism category to the ID category. For people born around the same time as Mr. Kennedy, the age group likely represented at Wassaic when he was there, it’s about 1:20. I.e. for every 20 people at Wassaic with ID, there was at least one autistic individual. All this without saying “they weren’t diagnosed”.

Once, again, I’ll stress autism was vastly undercounted then. I have literally hundreds of articles on this blog discussing this.

**and a lot more undiagnosed autistics, but that’s the logic Mr. Kennedy and his community denies.

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Shooting yourself in the foot: Administration for Community Living dismantled

3 Apr

A lot of autism parents supported Donald Trump and Robert Kennedy. This is especially true of those parents who believe in the (yes, once again I’ll say it: false) idea that vaccines cause autism. The decision constantly strikes me as “shooting oneself in the foot” as it’s clear that Mr. Trump and even Mr. Kennedy don’t really have respect for people with disabilities. Mr. Trump’s contempt for people with disabilities is well established. Let’s face it, if after 20 plus years being around (and syphoning money from) the autism parent community, one would think that Mr. Kennedy would have some idea of what Medicaid is.

One fact is very prominent in the mind of many parents of a disabled person: our adult children will likely spend about half their lives without us to help them. Unless you are wealthy, you are going to rely upon your fellow citizens–through our government (we the people and all)–to help our family.

One way we do that is by seeing that people can live in the community. To that end, there was an office in the Department of Health and Human Services called The Administration for Community Living.

The Administration for Community Living was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities.

I say “was” an office because Mr. Kennedy dismantled that office: “HHS Announces Transformation to Make America Healthy Again“. I think the references to 1984 and doublespeak are often overused, but, seriously? We are going to “make America healthy again” by dismantling an office that helps people with disabilities live where they want and fully participate in their communities?

Gee. Thanks anti-vaccine autism parents. Thanks for shooting yourselves in the foot and making it just a little harder for my kid to live their life as they want to live it. You got the validation you sought. Our kids pay the price. Well, them and those who will die from vaccine preventable diseases.

Good job.

By Matt Carey

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How RFK Jr. could add $100B a year to the debt

31 Mar

If autism were a vaccine injury, i.e. if it was legitimate to add autism to the vaccine injury table, I would say, “change the schedule now and pay however many families deserve it, no matter the cost.” But autism is not a vaccine injury. I will note that if Mr. Kennedy truly believed autism is a vaccine injury, he wouldn’t have hired David Geier to do the studies. Having Mr. Geier run an autism study is the equivalent of using loaded dice in a game of craps. Mr. Kennedy is buying the outcome he wants to see. If he wants to do more autism/vaccine studies, let the science speak, to quote Mr. Kennedy himself. He’s not doing that.

Robert Kennedy is (rightly) getting a lot of attention for his vaccine related actions. Just last week he pushed out the FDA’s top vaccine official (Top US vaccine official forced to resign, reports say). I will suggest it’s past time to stop reacting and start looking ahead–ask ourselves what is going to happen and what will the fallout be? That said, if we’ve learned anything from Mr. Kennedy, it’s that one should be careful and not fall into the conspiracy theory trap. So I’ll be careful and conservative as I predict what I think Mr. Kennedy is planning.

One Kennedy goal that seems obvious to me (and many others): get autism recognized as a vaccine injury. Get autism added to the vaccine injury table* to allow families to obtain compensation from the vaccine program. Perhaps he’s made this statement outright. I wouldn’t be surprised. But even if he hasn’t, I doubt many who have followed Mr. Kennedy’s words and actions would argue that this is a likely goal for him.

Let’s say he’s successful. What would be the result? Specifically, what would this cost? The vaccine court, after all, awards monetary compensation. It’s a pretty simple calculation:

$17B is a lot, but it’s not the $100B in the title of the article. Where did I get that? The support needs for an autistic person vary greatly, but, I would argue, they are higher than the average vaccine injury recipient. Also, we are talking about very young autistic children here, so there will be a lot of uncertainty projecting the lifelong needs and the court may be convinced to provide payouts on the higher end of the scale. Often in the past, I saw payments of about $1m to provide support for a lifelong disability awarded by the court, so I chose that number when I wrote the title of this piece. If we take 104,000 autistic kids being awarded $1m a year, we get $104B a year in vaccine court awards.

Let’s state the obvious: that’s a huge amount of money. That’s about 8 aircraft carriers a year. If Elon Musk found $104B a year in savings, believe me, we’d be hearing about it.

To put this more in context, the vaccine program has a trust fund of about $4.3B. This would be gone in the first year (potentially the first month) of autism cases being handled as a table injury. Technically, the vaccine court would have no money after that, and the awards should stop. This would put congress in a tight spot: allocate more money, or tell their constituents that that they voted to deny compensation to disabled children. I suspect they would vote to allocate funds. So we are talking about somewhere between $17B and $100B a year added to the budget, which would be directly added to the national debt.

I will admit that this is a very rough estimate of the financial cost. We could argue how much the average award would be. We could argue that not all autistic kids would get awards, even if autism were added as a table injury. So, maybe the total would go down. However, I also would argue that more kids will be diagnosed as autistic should autism be added as a table injury. Many more. How that balances out in the end can be debated, but I think a reasonable person can see that the answer will be billions of dollars a year and very likely many billions of dollars a year.

If autism were a vaccine injury, i.e. if it was legitimate to add autism to the vaccine injury table, I would say, “change the schedule now and pay however many families deserve it, no matter the cost.” But autism is not a vaccine injury. I will note that if Mr. Kennedy truly believed autism is a vaccine injury, he would not have hired David Geier to do the studies. Having Mr. Geier run an autism study is the equivalent of using loaded dice in a game of craps. Mr. Kennedy is buying the outcome he wants to see. If he wants to do more autism/vaccine studies, he would let the science speak. To quote Mr. Kennedy himself. He’s not doing that.

As I stated at the outset, one has to be careful of relying upon conspiracy theories. I believe I’ve stayed away from that here. I’ve made assumptions of what I think Mr. Kennedy wants to accomplish, but I think those are valid assumptions. And the cost analysis is very simple and I’ve laid it out very clearly. No chance to hide some trick in the math. I could be off by a factor of 10 and the conclusion would be the same.

One could and should ask why I am focusing on the financial cost and not the human cost. First, because autism is not a vaccine injury, we aren’t talking about a real human cost. Second, the financial cost is what will get the attention of Mr. Trump, Mr. Musk and congress. Sad to say, but I believe that to be the case.

The most logical outcome of adding autism to the vaccine injury table, in my opinion, is that congress and the president would be forced to choose between keeping autism on the vaccine injury table and ending the infant vaccine program. End the infant vaccine program and many people in Mr. Kennedy’s community (possibly including Mr. Kennedy himself), will say “mission accomplished.”** Pull autism off the table and the net effect is pretty much the same. The idea that vaccines cause autism will be accepted and vaccine uptake will drop. Many states will stop mandating infant vaccines. The infant vaccine program would be effectively dead.

Either way, Mr. Kennedy will be able to say, “See, I’m not anti-vaccine. I didn’t direct the infant vaccine program to end. They just followed the “science” (that I directed be created when I hired David Geier).”

By Matt Carey

* The vaccine injury table lays out injuries that are presumed to be caused by a vaccine. For example, if one develops paralytic polio within 30 days of getting the oral polio vaccine, it is assumed to be caused by the vaccine. If you haven’t heard of this, that’s because the U.S. doesn’t use the oral polio vaccine anymore.

** Recall that one of the people at Mr. Kennedy’s “Children’s Health Defense” is JB Handley (Vice Chair in 2018). Recall that Mr. Handley once wrote: “With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.”

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