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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 If you apply that (outdated) prevalence rate, you might expect only one or two autistic individuals in the entire institution.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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David Geier now works for HHS. He’s supposedly going to do autism/vaccine studies

27 Mar

I’ve been waiting for an announcement like this since Robert Kennedy was named Secretary of HHS. Someone from his community, someone known for pushing out bad and very biased studies, would be named to do vaccine/autism research. I’ll admit, my money was on someone else. But, in general, this announcement does not surprise me.

I first saw this in a link someone sent to me from the Washington Post: Vaccine skeptic hired to head federal study of immunizations and autism. The story is by Lena H. Sun and Fenit Nirappil. I will admit, I have cancelled my Washington Post subscription, but Lena Sun is one of the authors I will miss supporting.

David Geier is part of the father/son team that brought us the “Lupron Protocol“. You can read up on the details here and elsewhere, but I will just say flat out the opinions I’ve made clear many times: it was junk science of the worst sort and, even more, it was abusive to disabled children. In addition to that, the Geiers have a long and story career of junk science and bad medicine. It takes a lot to lose your medical license. Mark Geier (David’s father) did.

Unless he has gone back to school, David Geier holds a B.A.. He’s never held a real research position that I am aware of. He doesn’t have the background to be an assistant to the people who have done studies he apparently will be re-investigating, much less lead a project on his own. And, I think the record shows clearly, he is clearly and terribly biased.

Given news of this sort, I’d expect Science Based Medicine to have an article out quickly. Steven Novella did just that in David Geier Hired to Study Vaccines and Autism. It’s a good read and I don’t want to duplicate too much of what he says. But here’s one key paragraph:

Tapping David Geier tells us everything we need to know – this is a hit job. In my opinion, Geier has zero credibility in the scientific community due to his long history of crankery in this area. He is not qualified as is evidenced by a long history of shoddy science and discredited conclusions.

David Gorski at Respectful Insolence has also chimed in, with great detail and his own flair in David Geier: A blast from the antivax past hired to “prove” vaccines cause autism. Worth reading to get more details on the history of the Geier team.

So allow me to add a few secondary observations on what is happening. Per the Washington Post:

The information that the CDC has turned over to NIH includes the underlying data from four studies on vaccines and autism published in the 2000s, three current officials said. None of the papers found any link.

Step back and think about what this means. My opinion: the goal is not just to show that vaccines cause autism, but to discredit the previous studies and, with that, the CDC researchers who did that work. And, in general, public health researchers in general.

My next point has to do with Mr. Geier’s position at HHS. He’s listed as a senior data analyst* with the organization listed as HHS/OS/ASFR. AFSR is the Office of the Assistant Secretary for Financial Resources. A strange place to place an epidemiologist type person, isn’t it? Take a look at the org chart below. This is not a place for someone doing research like this. Not only that, but if my (admittedly limited) ability to read Mr. Geier’s entry in the HHS phone book is accurate, he appears to report directly to the Assistant Secretary or the Principal Deputy Assistant Secretary. Why? Why isn’t he in some team of, oh, I dunno, epidemiologists, reporting to someone who, call me silly, can check his work?

Also, this begs the question: is Mr. Geier going to be influencing grants? I.e., is he just shoehorned into this position or is he going to help the people who work on grants and such? This next is a stretch, but what if he’s going to help get grants to other credulous “researchers”? I suspect projects are supposed to be approved through a different office, and this is more for managing finances. But, who knows in this topsy-turvy world.

One could imagine a world where Mr. Geier was invited in to work with people with the expertise to do these studies. You know, make sure there are no shenanigans and all. That would give Mr. Kennedy a chance to get an answer he doesn’t want to see. That would take guts. Frankly, if I’ve learned anything over the past 20 years it’s this: Robert Kennedy has no guts. He can’t face the fact that he’s not only wasted decades of his life, but that he’s caused harm. Harm to disabled children and their families. No, I don’t think Mr. Kennedy has that sort of courage. And with this decision, he’s proving me correct.

by Matt Carey

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So, Mr. Kennedy does cancel some speaking engagements

13 Mar

I recently wrote about how Robert Kennedy Jr. is gutless (I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless).  Over the past few decades, Mr. Kennedy has spoken at many events where fake, even abusive, therapies are promoted to autism parents for use on their disabled children. As a keynote speaker, Mr. Kennedy could have either refused to attend or used his platform to distance himself from these charlatans. To my knowledge, he never has.

So I was a little surprised to read that Mr. Kennedy had pulled out of recent convention (Not Even RFK Jr. Wanted to Come to This Vegas Convention of Anti-Vaxxers and ‘Free Speech’ Brands). The Rolling Stone article states:

The result was more anemic than cohesive, however, in part because scheduled keynote speaker Robert F. Kennedy Jr. had pulled out following a February article from Mother Jones. The piece noted that another RePlatform speaker, Lonnie Passoff, president of financial services providers Green.Money and GabPay, the latter being the payment system of the far-right social media network Gab, had endorsed antisemitic comments on a prominent conspiracist’s streaming show. 

Good for you, Mr. Kennedy. Good for you. A speaker at the convention had endorsed antisemitic comments so you decided to not show up.

But this begs the question, why were you willing to speak when charlatans are preying on the families of disabled children? The example I gave in my previous piece was that of chemical castration. For those who didn’t read the piece, I’m not making this up or exaggerating.

Let me bring up another example. Bleach enemas. Charlatans sold (and still sell) chlorine dioxide (a bleach) as enemas and drinks to cure autism. Parents would give their kids bleach enemas, the kids would pass the lining of their intestines and people would say, “look, we got rid of the parasites that cause autism!” No, I’m not making this one up either. I wrote about it many times.

The main proponent of this “therapy” in the autism communities was/is a woman named Kerri Riviera. One of the times she spoke was at a parent convention called AutismOne in 2013. The keynote speaker that year was Robert Kennedy.

Mr. Kennedy could have refused to speak. He could have spoken at the time that he disapproves of these therapies. He could have spoken out since then, demonstrating regret for lending his name and credibility to charlatans such as these.

To my knowledge, he never has.

That would have taken courage. And the ability to discern junk science. These are traits I have not seen Mr. Kennedy show often.

__

By Matt Carey

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Four years out, let’s look back on the Shelter-In-Place order for Santa Clara County

11 Mar
It’s four years since Santa Clara County (SCC) ordered shelter-in-place to limit the spread of COVD-19. This was the first such order in the country when they did this on March 16, 2020. It is a decision which gets much criticism today from some quarters. Is that criticism deserved? Let’s start with a simple metric to see how well SCC did in general: the death rate. Deaths due to COVID divided by total population. For SCC, the rate is 0.16%. [1] That’s 3081 people who died of COVID since we started counting. Let’s compare that to other locations (data as of March 2, 2024) and ask, is the SCC number lower? Here are some values: SCC:                0.16% California:       0.287%. United States: 0.357% Florida:           0.380% The methodology is different than what I used for Santa Clara County, but not so different as to explain the very large differences in the death rate. Santa Clara County is well under the US average. It’s well under the value for Florida (which famously decided against COVID prevention measures). We can’t say it’s because of the shelter-in-place measures, but certainly something (more likely some things, plural) went well in SCC. Let’s put this in terms of lives lost.  First off, had Santa Clara County had the same rates as the US as a whole, another 3000 or more people would be dead today. That’s a lot of grandparents. That’s a lot of parents.  That’s a lot of people. Humans who didn’t have to suffer the painful and terrifying death that comes with COVID. Consider the US as a whole. About a million people have died of COVID.  If the country had the same death rate as Santa Clara County, that number would be under 500,000. Five hundred thousand Americans. Of course we can’t say, “SCC did shelter-in-place and that’s why their numbers are as low as they are”. A lot of factors were in play. But shelter-in-place kept the hospitals from overflowing.  Shelter-in-place meant that a lot of people didn’t get sick until there was a vaccine that dramatically lowered the chance of death. So I’m willing to say that shelter-in-place saved people. Am I saying it came without any cost? Absolutely not. But I will add this–there was going to be a huge disruption no matter what. It was a pandemic. A lot of people in places like Facebook argue that anything bad that happened was all due to shelter in place and other pandemic limiting measures. — By Matt Carey

I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless.

26 Feb

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

Robert Kennedy (RFK Jr.) is running for president. He failed to gain the Democratic Party nomination and is now running as a third-party candidate. Since the beginning of his campaign, he’s faced criticism for being anti vaccine and anti-science. As someone who has watched Mr. Kennedy for nearly two decades I will agree: he is, indeed, anti-vaccine and anti-science. But that’s not why I am strongly against the idea of him being president. I oppose his bid for one reason:

He’s gutless.

Let me explain.

Long before Mr. Kennedy reached national prominence with his myriad of bad ideas during the COVID-19 pandemic, he was well known in the anti-vaccine autism-parent community. He was probably most famous for pushing the failed idea that mercury in vaccines caused an autism epidemic (an idea he still won’t abandon). And this is where many discussions focus on how his actions are anti-science and anti-vaccine. But to me, I hurt for the harms Mr. Kennedy’s advocacy has caused autistic people and the autism communities. One can say, “his anti-vaccine views have caused harm to public health”. One would be right. But, the anti-vaccine movement has long used autism and autistic people as the hammer with which they attack vaccines. And, to quote Sancho Panza in Man of La Mancha, “Whether the rock hits the pitcher or the pitcher hits the rock, it’s generally bad for the pitcher”. Being the weapon of choice for attacking vaccines has caused increased stigma and allowed charlatans to sell fake “cures” for autism which range from useless to abusive.

As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless.

For decades there have been regular autism-parent conventions focused primarily on two things: promoting the idea that vaccines cause autism and promoting fake “cures” for autism as a vaccine injury. And Mr. Kennedy has been prominent at these conventions, serving as a keynote speaker.

Mr. Kennedy speaks primarily on the idea that vaccines cause autism (they don’t). He’s well respected as someone who has been involved for decades in this arena. His name gives some credence to the others at these conventions, including those who push abusive therapies.

I have never heard of Mr. Kennedy speaking out against the fake, even abusive, “therapies” pushed at these parent conventions. Why? In my opinion:

He’s gutless.

Allow me to focus on one of the most egregious fake therapies pushed as part of the vaccines-cause-autism movement. There are more. Many more. But let’s just discuss chemical castration.

If you are thinking, no way that happened, Matt. You must be exaggerating. I’m not.

Doctors were prescribing Lupron in order to reduce the testosterone in autistic children. That’s chemical castration in my lay opinion. Dr. David Gorski, an oncologist, wrote a series of articles about this “treatment” as “why not just castrate them“.

Surely they had a good reasoning for taking such drastic measures, you must be thinking. No, they didn’t. In fact, the “science” behind the therapy is horrifically bad. It would be funny if it wasn’t actually used on children.

How was the “Lupron protocol” justified? First, let’s start with the idea that autism is caused by mercury. It isn’t, but this is the idea that Mr. Kennedy pushed so hard 20 years ago. Mercury intoxication is commonly treated by chelation, which is a way to remove mercury from the body. For years medical practitioners pushed chelation on autism parents (again, often at these autism parent conventions that Mr. Kennedy is known to speak at). Only chelation didn’t work. It didn’t work because autism isn’t mercury intoxication. But to people like the Geiers, the problem was that chelation wasn’t working, the problem was they needed a better way to chelate. They came up with the idea that testosterone was binding to mercury and keeping chelators from working. So, they postulated, remove the testosterone and one can remove the mercury and the kid will stop being autistic. Which brings us to chemical castration: remove or reduce testosterone in the body. Which brings us back to Lupron.

Seriously, it happened. And a father-son team named Geier led the charge.

In order to prescribe the Lupron, the Geier’s needed a diagnosis. Insurance companies aren’t going to allow people to prescribe Lupron for mercury intoxication (even ignoring the fact that the Geiers didn’t have evidence for mercury intoxication). So the Geier chose precocious puberty as the diagnosis. Diagnose a kid with precocious puberty and you can prescribe Lupron.

The Geiers got into trouble for this. In 2013 they were facing disciplinary action as noted by blogger Todd W. at Harpocrates Speaks (among many others). They were facingmedical license suspension. In multiple states. So, you’d think people might be questioning the Geiers’ “protocol”. Perhaps checking the “science” that supported it? Well, not in Mr. Kennedy’s circles, apparently.

A few days after Todd W. wrote his article, two things happened. The Geier’s spoke at a parent convention called AutismOne. And Robert Kennedy was the keynote speaker for that convention.

Think about it. Mr. Kennedy could have told the parents at that convention that he stands apart from the Geiers. He could have just said perhaps people should be cautious, a relatively weak stance. Mr. Kennedy could have taken a stronger stance said that what the Geiers were doing was chemical castration and it was wrong, a much stronger stance.

To my knowledge Mr. Kennedy did not speak out then against the Geiers or any other practitioner of fake autism cures. I have no knowledge of him ever speaking out against charlatans.

It would have taken courage to speak out. It would have taken courage to admit to himself that he’d missed the obviously bogus science before, and that he, a self-professed science expert, was wrong. And it would have made a difference. I don’t consider it hyperbolic to say that I consider chemical castration of disabled (or any) children to be abusive. And Mr. Kennedy could have slowed or even stopped this practice long before Dr. Geier lost his license. He was respected and a frequent speaker at these conventions.

It takes courage to face allies (the Geiers were long known for pushing the mercury-autism link. Mr. Kennedy cites them multiple times in his books) and say they are doing wrong. Mr. Kennedy didn’t even have to admit that the mercury-causes-autism idea was false (which would have taken another step of courage and would have been the right thing to do). Just that chemically castrating disabled children is wrong.

Seriously, how hard is it to say, “Chemically castrating disabled children is wrong”, Mr. Kennedy?

Mr. Kennedy has spoken regularly at the “vaccines-cause-autism” parent conventions. And the Geiers were not the only ones pushing abusive therapies. It would have taken courage to say, “I will not speak and lend my name to a meeting where fake therapies are promoted.” But Mr. Kennedy lacks that courage.

This is largely due, I believe, to the fact that Mr. Kennedy lacks to courage to analyze his own lack of scientific expertise. My belief is that Mr. Kennedy, to this day, doesn’t understand just how bogus the “Lupron protocol” was. But it would take a courage for someone who has branded himself as a person who understands science (even though he lacks any credentials) to say, “You know what, I didn’t catch on to the idea that the science the Geiers were claiming was unsound.”

One might ask, was the Geier science obviously bogus? I would say yes and I would say that someone with the expertise Mr. Kennedy claims to have should have easily seen there was a problem very early on. Let me explain. The Geiers claimed that mercury and testosterone form “sheets”, large complexes, in the brains of autistic children. Sounds very scientific and all, until we found that the study the Geier’s were basing this idea upon involved boiling mercury and testoterone in benzine.

In my opinion, Mr. Kennedy should have known that a child’s brain is not similar to boiling benzine. Yes, this sounds snarky, but it really is that simple. The science behind the Geier’s “Lupron protocol” was really that bad.

But this discussion risks getting back into the realm of “He’s anti-science”. I bring this up not to point out Mr. Kennedy’s lack of science chops, but to point out that the science was so bad that it didn’t really take much analysis to see it.

That is if one has the courage to question. To question one’s allies. To question one’s own expertise. To question whether one’s own inaction led to the abuse of disabled children. And, again, in my opinion this was abuse. And Mr. Kennedy could have helped stop it sooner.

Again, I only picked one example. And this discussion has gone long, so you can understand why I chose only one example. But there are many examples of fake cures promoted at autism-parent conventions that Mr. Kennedy could have stopped. There’s also a lengthy discussion we could have about the stigma the anti-vaccine movement has brought to autistic people (one of Mr. Kennedy’s allies tried to label autism as “mad child disease“, to give you one example.) Mr. Kennedy could have spoken out agains the stigmatizing language. But the fear of autism and autistic people has long been a mainstay of the anti-vaccine movement.

We need a president with courage. While others discuss his anti-vaccine views, his near self-delusional belief in his scientific acument, let me just say this again: Mr. Kennedy lacks courage.

Robert F. Kennedy Jr. is gutless.

_____

By Matt Carey

More discussions
This blog on Mr. Kennedy.
Articles on this blog about the Geiers.
Articles on this blog about Lupron.
Mark Geier’s Wikipedia Page.


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Anti vaccine activists are angry about a new study…and they didn’t even bother to read it

14 Mar

This is a big piece of what the “vaccines-cause-autism” idea is built on. Really bad analyses. Another study shows up showing that vaccines don’t cause autism. People immediately jump to give talking points to their community: “ignore this study! In fact, it’s just another conspiracy to defraud you!!!!!”*

But they know from history, their community doesn’t check. They don’t test whether the talking points hold up. Either that, or they really are this bad at simple math.

One reason I slowed down a lot on writing debunks of the “vaccines cause autism” community is that it’s very repetitive. It only takes a few minutes to see where they make their mistakes. I admit, I have the training and the time to do that checking, but it leaves me wondering. As in, it’s hard to not ask: “are they really this bad at science? Are they so biased they don’t know they are wrong? Or, are they lying?” I don’t know. What matters most is they are wrong. I am grateful that I had the time to spend checking their claims and was able to not get sucked into that world.

That intro aside, there was a recent study that, once again, shows that the MMR vaccine doesn’t increase autism risk. 21 years since Wakefield’s junk study and we are still spending time and money countering his misinformation. When you look at what the autism community needs, it’s just sad to see resources used this way. But I get it. The anti-vaccine community is doing real harm (note the rise in measles in the US and elsewhere). But, dang, I’d like more work done to help my kid.

So, what’s this new study? Measles, Mumps, Rubella Vaccination and Autism: A Nationwide Cohort Study. With the conclusion:

The study strongly supports that MMR vaccination does not increase the risk for autism, does not trigger autism in susceptible children, and is not associated with clustering of autism cases after vaccination. It adds to previous studies through significant additional statistical power and by addressing hypotheses of susceptible subgroups and clustering of cases.

Thanks for doing this, but, again, the results are not surprising in the least.

Naturally this brought about a big response from the anti-vaccine community. The go-to place for defense of “vaccines cause autism” used to be the Age of Autism blog. I went there and found they just recycled a piece from a guy named James Lyons Wieler. Apparently he was once a scientist, but he now seems to be a guy asking autism parents for money to write bad articles about how vaccines cause autism. In this case has found the “Smoking Gun” for why the MMR study is so wrong.

(1) The smoking gun is the study-wide autism rate of 0.9-1%. The rate of ASD in Denmark is 1.65%. Where are the missing cases of ASD? Given past allegations of this group’s malfeasance and fraud, the rest of the study cannot be accepted based on this disparity alone: the study group is not representative of the population being studied.

Clearly they must be fudging the data!!!!!

This appears to have become the talking point that the anti-vaccine community is passing around. It was picked up by Brian Hooker. He wrote “A Scientist’s Rebuttal to the Danish Cohort Study“:

1. Children were notably missing from the study sample:

First and foremost is the underascertainment of autism cases within their data sample. The study authors used Denmark population registries of children born in Denmark of Danish-born mothers which should reflect the current reported autism incidence in Denmark at 1.65% (Schendel et al. 2018, JAMA). However, the autism incidence within the sample of the Hviid et al. paper is 0.98%, meaning that approximately 4,400 autistic children are missing from this study. The authors do not discuss the discrepancy in the number of cases.

Again, his number 1 point, the missing children!

Even JB Handley (remember him? Yes, he’s back) wrote about this. Focusing his whole piece on this “missing” group in the MMR study: New Danish MMR study shows autism rate of 1 in 100—CDC should rush to Denmark!

2. The most compelling data in the study will never get covered: why is the autism rate in this study only 1 in 100?

Here in the U.S. we’re at 1 in 36! Shouldn’t CDC researchers rush to Denmark to figure out why their autism rate is so much lower than ours? For every 1,000 Danish kids, only 10 have autism. But here in the U.S., we have 28 per 1,000, that’s 177% more autism! I thought Paul Offit wanted everyone to believe the autism rate was the same everywhere? What gives?

Hold on to your seat, Handley. It’s about to get discussed.

I had thought I’d take the easy route and just email the study author for an explanation. That could have answered the big question for Handley, Weiler, and Hooker. But that would take a day or two to get a response from Denmark. Why not just, you know, read the paper? Or, just the introduction?

Under the “Abstract” section of the MMR paper, which has the “missing” autistic kids and a lower prevalence rate:

Participants: 657 461 children born in Denmark from 1999 through 31 December 2010, with follow-up from 1 year of age and through 31 August 2013.

Under the methods section for the earlier Denmark paper, which has the higher prevalence rate:

All live births in Denmark between 1980 and 2012 were identified in the Central Person Register and followed through 2016 for an ASD diagnosis

It’s not that hard to compare the two studies.

One study looked at Danes born from 1999 to 2010. And took data from 2013. This is the MMR study.

The other study looked at Danes born from 1980 and 2012. And took data in 2016.

Apples, meet Oranges.

Seriously, people are surprised that they came to different answers as to the overall prevalence? I mean, this is your “smoking gun”? This is the best the “vaccines cause autism” community can do? If nothing else, one study took data later than the other. You are the “it’s an epidemic!” team, surely you accept that the autism rate is higher in the later dataset.

But, hey, this didn’t take the full 5 minutes I allocated to check the claims of this “smoking gun” against this new study. I still had 4.5 minutes.

So, let’s see if the data really are compatible. Can we take the data from the prevalence study and get the same number as in the MMR study? Yes, I’m a geek and this is what I do. But we just saw that 2 Ph.D.’s (Hooker and Wieler) and a business guy (Handley) didn’t think to do that. Is it really that hard? (I do wonder how Handley made money. Seems like he must have relied on someone else to do the numbers.)

I just wrote about the autism prevalence study: Yes, there are a lot more adult autistics than commonly thought. The real question is what we do with this information. I have the graph from the prevalence study, so I ran the numbers quickly. If we limit ourselves to the autistics in the MMR study (born 1999 to 2010) and take data in 2013, we get a prevalence value of 1.02%.

1.02% using the prevalence study. Compared to 1% in the MMR study.

They are the same. No “malfeasance”. No “fraud”. No “discrepancy”. And, Mr. Handley, no evidence you can use to blame the HepB vaccine for autism.

Now for the dull part. Here’s my math.

Step 1: I digitized the graph. The red points are where I took prevalence data from the graphs. Each line represents 2 birth years, so I took points where for the age of the average kid in each cohort in 2013.

Here’s the summary table from those data points.

I did this fast. Let me know if I made a mistake. That’s why I’m showing my work. It’s not precise because, well, it’s done by hand. Also, there’s the fact that the MMR paper was for kids born from 1999 to 2010. The prevalence study has kids grouped by 2 years. So I have data for 1998-99 where I only really want 1999. It’s good enough. The “age in 2013” is what the digitizer gave me for the datapoint positions I chose. I can’t get exactly, say, 10.5. But, again, it’s good enough.

Anyway, there’s no “smoking gun” as James Lyons Weiler says. There aren’t children “notably missing” as Brian Hooker claims. And the “most compelling data” according to JB Handley is just that he can’t read a scientific paper.

This is a big piece of what the “vaccines-cause-autism” idea is built on. Really bad analyses. Another study shows up showing that vaccines don’t cause autism. People immediately jump to give talking points to their community: “ignore this study! In fact, it’s just another conspiracy to defraud you!!!!!”*

But they know from history, their community doesn’t check. They don’t test whether the talking points hold up. Either that, or they (people like Handley, Hooker and the rest) really are this bad at simple math.

—
By Matt Carey.

*Yeah, you guys are pushing a conspiracy theory. I know you like to say “oh, he called us conspiracy theorists, therefore we don’t have to listen to him.” Surprise me. Grow a backbone and defend the points in this commentary rather than either (a) ignoring it or (b) dismissing it because I pointed out that you are claiming scientists conspired to fool the world.

Yes, there are a lot more adult autistics than commonly thought. The real question is what we do with this information.

13 Mar

What if I told you that there are a lot more autistics born in the 1980’s than 1 in 10,000. And this isn’t me saying “it’s almost certainly true”. This is fact. I’d hope that one of your first reactions would be, “what should we do with this information to make life better for autistic people?”

Hang around online autism discussions, especially those involving causation, and you will undoubtedly read someone claiming “back in the 1980’s, the autism rate was 1 in 10,000.” People base this on studies done back in the 1980’s and they assume or assert, “nothing has changed since then”. Which is odd, since a whole lot has changes in autism understanding since the 1980’s.

What if I told you that there are a lot more autistics born in the 1980’s than 1 in 10,000. And this isn’t me saying “it’s almost certainly true”. This is fact. I’d hope that one of your first reactions would be, “what should we do with this information to make life better for autistic people?”

If your first reaction was, “this can’t be true. There’s an autism epidemic because of vaccines or some other pet causation theory”, you have your priorities in the wrong place. If you think you are an autism advocate, you aren’t.

Back to the recent study. When I read a recent study from Denmark, I was amazed. No exaggeration, I was amazed to see data so clearly showing that the autism prevalence for autistics born in the 1980’s is much higher than previously reported. I say this with apologies to the study authors, because there’s a lot more in this study. That said, there is also the trend of prevalence* with time. It’s, well, amazing. The study is Cumulative Incidence of Autism Into Adulthood for Birth Cohorts in Denmark, 1980-2012. Basically, the authors mined the Danish Central Person Register for people with autism diagnoses. Here’s the graph from that study (click to enlarge):

There is a phrase for a certain type of graph in my work: spaghetti plots. This isn’t quite that complicated, but it is complicated enough to take some time to walk through. So let’s take that time. Basically, each line shows show data for people born in a given 2 year period as a function of their age. The bottom line, for example, shows data for people born in 1980-81. The data is basically what the autism prevalence would be if someone had reported it in the year for that age.

Let’s take a few examples. Again, for that bottom line (people born in 1980-81). At age 10, the autism prevalence is about 0.02%. So, if you had asked in 1990 (when these autistics were 10), “what’s the autism prevalence for 10 year olds in Denmark”, you’d have been told 0.02%. 2 in 10,000. And if you never looked again, that’s what you’d think the autism prevalence is for people born in 1980. Which is exactly why you hear, “the autism prevalence back in the day was 1 in 10,000.” No one looked again.

But now we have more data. Let’s look at, say, age 20, which would be about year 2000. By this point, the autism prevalence has risen to about 0.13% (about 1 in 800). That’s 6 times larger than when this group was 10. This doesn’t mean that more people “became” autistic. No, it means that people previously undiagnosed were identified. By the time this group was 35 years old (about 2015), the autism prevalence was 0.33% (about one in 300). That’s 16 times larger than when they were 10.

I digitized the data for the 1980-81 group and plotted it. If I get time I’ll make a better graph. It isn’t 100% precise, but here’s that graph (click to enlarge):

Let’s say again what we see here:

1) the autism ‘rate’ for Danes born in 1980-81 is not 1 in 10,000, it’s about 1 in 300. Getting comparable to the autism ‘rates’ reported today.
2) the majority of these autistics were not identified until they were older than 10 years old.
3) the autism ‘rate’ is still climbing today. Yes, they are still diagnosing people well into adulthood.

Now, consider some of the other data in the study. For example, Danes born in 2000-01 had an autism prevalence in 2016 of 2.8%. With no sign of a plateau. When those Danes were 8 years old, their autism prevalence was about 0.77%. Yes, it climbed by a factor of 3+ from age 8 to age 16.

Another way to look at this is: people have been diagnosed throughout the lifespan. And this is still going on.

We’ve only looked at a small subset of the data in this study, but we have to ask ourselves what do we do with these results? I know what I think we need to do:

First, we have to accept that many autistics were not diagnosed when they were children. The autism prevalence in the adult population is much higher than the old data would suggest. It may be (probably is, in my view) close to or the same as the prevalence in children.

Second, we have to accept that the autism prevalence in children is likely higher than what is being reported today. The 2.8% reported for one birth cohort in Denmark is basically the same as that reported in the highest estimates in the U.S.. And there was no sign that this Danish value is the maximum value that will be seen for that cohort, or any other.

Third, and here’s where we need actual action, not just a change in beliefs. If we believe that the supports, services and therapies autistics deserve are different than those targeting other disabilities (which I firmly believe), we should be working harder to diagnose those as yet undiagnosed. This goes for young children as well as adults.

Third, and here’s where we need actual action, not just a change in beliefs. If we believe that the supports, services and therapies autistics deserve are different than those targeting other disabilities (which I firmly believe), we should be working harder to diagnose those as yet undiagnosed. This goes for young children as well as adults.

I am the parent of an autistic teenager. There’s a lot of advice (good and bad) on how to support autistic children. But there’s very little on autism specific supports for adults. And this hasn’t really changed in the past decade or more. One way to get real information is to take a look at what has worked and what has failed for autistic adults. Besides helping those adults and other autistic adults (a good cause in itself), it helps pave the way for the autistic kids coming of age. Well, you know what? It’s hard to do those sorts of studies if we don’t even identify who is and who isn’t autistic in the adult population.

As a final aside, consider the CDC autism prevalence estimates. They use a very different methodology than in this Danish study, which will introduce some differences in the results. That said, the CDC focuses on children 8 years old. The CDC team had good reasons to choose 8 years old, but let’s look at some of the data from this recent Danish study and ask what this tells us about the CDC data. For people born in 2000-2001, the Danish autism prevalence is be about 0.77% at age 8. One might say, “Hey, the CDC autism prevalence for 8 year olds born in year 2000 is 1.13%. Autism is more prevalent in the U.S. than in Denmark.” People making this sort of comparison often then try to fit this into their own favorite causation theory. As in, “Denmark gives fewer vaccines, so vaccines cause autism!”. But, wait. The autism prevalence for Danes born in 2000 is actually 2.8%, well over double the CDC estimate for US kids born in 2000. Makes the comparison of CDC numbers to others a bit of an apples and oranges story.

More to the point, consider graphs of CDC prevalence vs. time. It goes up and up, doesn’t it? Kids born in 2004 have a higher autism prevalence than those born in 2000, right? But if you’ve missed a bunch of the kids because you looked at 8 year olds and many kids aren’t identified by then, can you really say that the number of autistic kids has gone up?

Another way to say this: the CDC data are good for what they are. What they aren’t is an actual census of the fraction of kids who are autistic in any given birth year. Trying to say, “there’s an epidemic” from these data just can’t be done.

But that’s getting off the topic. As I noted above, the real question with these data are not “how do they fit into the failed idea that [exposure x] causes autism”. The real question is, what do we do with the knowledge that there are a lot of autistic adults? That there are a lot of kids, younger and older, who aren’t diagnosed accurately? That autism gets diagnosed through the lifespan? I’ve pointed out what I think above. We act on the data. We do what we should be doing: try to use this information to make life better for all autistics, be they young or old, diagnosed or not.

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By Matt Carey

*note–I am not an epidemiologist. Rather than try to keep bouncing between “incidence”, “cumulative incidence” and “prevalence”, I will use the terms more loosely than an epidemiologist would.

MMS, Miracle Mineral Solution, CD, Chlorine Dioxide…call it what you will, it’s abusive and it’s fake medicine

3 Jan

I’ve written a few times about MMS. Rather than the long articles on specific topics, I feel it’s appropriate to make a simple, short statement:

MMS, aka Miracle Mineral Solution, aka CD, aka chlorine dioxide is bogus. It’s junk. Worse than that, it’s abusive. Yes, you will find segments of the autism-parent community who promote and use it. But that doesn’t make it actually useful, nor does it make it OK to use.

Here’s the thing–it’s a bleach solution. The idea that this can work to “detoxify” or “kill parasites” is just flat out wrong.

The Autism Research Institute (ARI), a group which has promoted unproven alternative treatments for autism throughout its history, has this to say:

Given these issues, we advise against using MMS at this time. We hope parents will remain critical of unsubstantiated claims that children have recovered or greatly improved in the absence of objective proof. We also strongly encourage any parents who choose to administer MMS to their children to report it to their physician so that side effects can be monitored.

If a group such as ARI, a group favorable to alt-med, comes out with such a strong statement, you know it’s time to question the “scientific” claims and testimonials.

As to why I call this abusive? Used as an enema (one method strongly promoted by MMS activists) it causes people to pass the lining of their intestines. You can find pictures of these “worms” on the web, where people claim they have killed a parasite. (This is just the worst use of MMS. Taken orally it is still abusive).

Again, from the ARI:

The mucous threads that children expel during MMS treatment, which have been touted as worms (though laboratory analysis does not support this claim), are the body’s method of protecting itself from induced oxidative stress in the lower digestive tract equivalent to the mid-day sun in its ability to produce severe sunburn.

Seriously, what else can one call pushing chemicals into disabled children’s digestive tracts until they start passing tissues? Yes, parents subjecting their children to this are not doing so with the intent to abuse, but they are being fooled into a harmful act.

Since I keep getting commenters on this blog defending this practice, I felt the need to make this short and clear statement. MMS is bogus. It’s harmful.

Just don’t do it.
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By Matt Carey

Here’s one part of Brian Hooker’s “reanalysis” that shows just how cynical the anti vaccine movement is

18 Dec

When my kid was diagnosed autistic I started reading research papers (I am a Ph.D. researcher by profession) and the raw data. One thing that struck me immediately was the fact that minority children are much less likely to get a diagnosis than white kids. And minority kids are diagnosed later.

This inequity really bothers me. Accurately identifying the needs of a disabled child can focus the appropriate therapies and supports on that child. The need to rectify this inequity is 100% accepted within the autism advocacy and research communities.

This inequity poses a problem to people who claim that autism is an “epidemic”. If we are not identifying all the autistics in any given group (we aren’t), autism prevalence numbers are inaccurate. Being inaccurate, how does one compare, say, one CDC prevalence number with one 2 years later and claim a “real” increase?

One can’t. Plain and simple.

So, for years, groups like those promoting the idea that autism is caused by vaccines have not only ignored this inequity, they have actively denied it. They are stuck between accepting that the data can’t show an epidemic, or accepting that minorities have some sort of protection from this supposed “autism as vaccine injury”.

When was the last time you read something from, say, the Age of Autism blog or Andrew Wakefield calling for efforts to end this inequity? You haven’t. They don’t do it. When have you heard from someone like Brian Hooker that we should study minority populations to see what “protects” them from “vaccine injury”? You haven’t.

Who is Brian Hooker? Brian Hooker is a parent of an autistic child. Brian Hooker strongly believes that vaccines cause autism. He can back this up with his observations of his child’s development. Observations which are contradicted by his child’s medical records. I discussed this before as Double checking Brian Hooker’s story in VAXXED. A Special Master (a judge in the vaccine court) put it very strongly:

After studying the extensive evidence in this case, I am convinced that the opinions provided by Petitioners’ experts in this case, advising the Hooker family that there is a causal connection between SRH’s vaccinations and either the initial causation or aggravation of SRH’s ASD, were quite wrong.

In the original, the Special Master emphasized “quite wrong“.

So, we have someone who believes vaccines cause autism to the point of ignoring the facts in front of him.

A few years ago Mr. Hooker “reanalyzed” some data from an old CDC study, suggesting that evidence showed that the MMR vaccine might increase risk in African American boys. That was discussed in great detail here and elsewhere. (for example: Brian Hooker proves Andrew Wakefield wrong about vaccines and autism and MMR, the CDC and Brian Hooker: A Guide for Parents and the Media).

Mr. Hooker’s study was retracted. In the research world thats a big deal. As in, embarrassingly bad.

Recently, as in 4 years after his original study, Mr. Hooker republished his “reanalysis”. In the Journal of American Physicians and Surgeons. I’d be completely embarrassed to have a paper in that journal, to be blunt. A lengthy discussion of this reappearance of the study can be found at Respectful Insolence as Brian Hooker’s antivaccine pseudoscience has risen from the dead to threaten children again.

Let me just focus on how Mr. Hooker, in my view cynically, abuses the African American community in order to attack vaccines. From the website of an organization Mr. Hooker belongs to (the ironically–to be polite–named “Children’s Health Defense”), we read this:

Main Points from Reanalysis:

The rate of autism diagnoses has increased alarmingly in the U.S., and is about 25 percent higher in black children. Boys are far more likely than girls to receive this diagnosis.

…

This is not only wrong, it’s wrong in a way that points to incredible dishonesty.

This first point is that autism is about 25% higher in black children. A “main point from the reanalysis”.

Tell me, when you read that did you think, “this study found that autism is more prevalent in African American children”? If so, you were misled. The 25% higher prevalence is from a different study than Hookers. And that other study says something completely different.

From the Hooker study:

However, one study showed that prevalence of autism in African-Americans was approximately 25% higher than that of whites when the data were adjusted for socioeconomic factors[7].

Reference [7] is Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study.

The Socioeconomic Equality study states:

Also notable is that, although the overall ASD prevalence was higher among non-Hispanic White and Asian children than among non-Hispanic Black or African-America and Hispanic children, when the results were stratified by SES, we saw that the racial/ethnic differences in prevalence varied by SES (Table 3). The lower prevalence among non-Hispanic Black or African-American and Hispanic children was seen only in the low SES category, and the fact that more non-Hispanic Black or African-American and Hispanic children live in poverty contributed to the lower overall prevalence among these groups.

Emphasis mine. Overall ASD prevalence was lower for African American children. Not 25% higher. This lower prevalence was due to lower socioeconomic status. I.e. poverty.

Want to see this a different way? Here’s a figure from the paper (click to enlarge):

The overall prevalence in White non-Hispanic kids was 6.9/1000. For black non-Hispanic kids it was 5.7/1000. About 20% lower. Not 25% higher as Mr. Hooker claims.

Fewer African American kids are getting autism services. Not because they aren’t autistic, but because their poverty keeps them from getting a diagnosis.

This is something we should be working towards fixing. No question. But don’t look to the anti-vaccine community to care or act. It’s an inconvenient fact for their epidemic story.

I guess he has such a low level of respect for the people in his own community (those who believe vaccines cause autism), that he thought no one would check this.

By the way, this paper isn’t the only one that shows a lower autism prevalence among African Americans. You know those CDC autism prevalence reports that come out every two years? Every single one has reported a lower prevalence among African Americans. Every one.

Here’s a line from the latest report:

Previous reports from the ADDM Network estimated ASD prevalence among white children to exceed that among black children by approximately 30% in 2002, 2006, and 2010, and by approximately 20% in 2008 and 2012.

When I saw the claim on Hooker’s organization’s website I figured he must have cherry picked a study that shows what he needed to make his story work. It’s just such common knowledge in the autism community that African Americans get diagnosed less frequently. It’s in every CDC report. I didn’t know he wasn’t cherry picking, he was just misrepresenting the study entirely.

I discuss this as a scientist. He “misrepresented the study”. My father had a word for that sort of behavior: lying.

OK, Brian. You’ve read the studies and decided to do nothing about the fact that many autistic African American kids aren’t getting identified and getting appropriate services. I get that, you have your own cause. But, really, is that community so much of a nothing to you that you can just use them like this? I ask rhetorically. You and your community have always acted with callous disregard.

I once had hope that as it because completely obvious that you and your community were wrong (and that was many years ago), you’d join the actual autism community and put your advocacy to use. I now know that will never happen. And, frankly, we don’t need dishonest people.

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By Matt Carey

Why autism at 2.5% isn’t surprising.

29 Nov

Let’s get one thing out right away–autism prevalence studies undercount. Not all autistics are diagnosed. That’s just a fact. Consider the recent CDC study. They look at school and medical records. In many cases, they find children are autistic based on their records–but the schools and doctors hadn’t diagnosed those children.

Combining data from all 11 sites, 81% of boys had a previous ASD classification on record, compared with 75% of girls (OR = 1.4; p<0.01).

Yeah, more than 20% of the kids counted in their prevalence had no diagnosis. They and their families didn’t know.

And, if there isn’t enough in the records to show a kid is autistic? That kid gets uncounted altogether.

So, when people look at the CDC prevalence estimates from over the years and cry “epidemic”, well, there’s a reason why those people usually have some causation theory that they believe in. The irony is that they are usually wrong that their theory needs an epidemic to support it. But, heavily biased people are not usually the best sources of reliable analyses.

What would be a better method of counting how many autistics are in a population? Sounds obvious–test all the kids in a given population. Equally obvious–this is a much more expensive and difficult task. One such study was published in 2011. Yes, 7 years ago. In Prevalence of autism spectrum disorders in a total population sample, the autism prevalence in Korea was found to be 2.63%. A study performed in South Carolina and reported at IMFAR last year found a prevalence of 3.62%.

This all said, we had another autism prevalence come out this week–The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children. This study found a prevalence of 2.5%.

Now here’s a nice thing about this recent study–OK, two nice things. First, they don’t just look at kids of one age. Second, you can obtain the data. Which I did. Let’s look at the autism prevalence broken down by birth year.

Do you see autism prevalence increasing with birth year? I don’t. I see some scatter, but in general the autism prevalence is about 2.5% from birth year 2000 to 2010. For what it’s worth–the scatter is due to the small numbers of kids in each year making the value uncertain. It’s statistical noise.

If you are wondering about how the autism prevalence drops off above birth year 2010, keep this in mind: kids aren’t diagnosed at birth. In the CDC study, 1/2 of the kids didn’t get diagnosed until after 52 months (4 years 4 months) of age. For this type of reason, the more recent study didn’t count kids under 3 years of age.

People are very fond of graphing autism prevalence data from various years and claiming these are accurate, full counts of autism prevalence (they aren’t) and, from that, claiming an epidemic. Here are the CDC data:

The numbers go up. Steadily up. I’d have to be a total denialist to not see that as evidence of an epidemic, right?

Consider this–the CDC autism prevalence for birth year 2000 is 1.1%. The study just out gives an autism prevalence more than double that (2.9%). For the same birth year. Both are good studies, for what they are. Both are limited. But, for one thing, the CDC study was performed in 2008. 10 years ago. Since then a lot has changed. For one thing, the kids got older and had more chances to get diagnosed. They didn’t just suddenly become autistic in the past 10 years.

So, yeah, we have an autism prevalence estimate of 2.5%. I’m not surprised and I’m not taking this as evidence of an epidemic.

The unfortunate thing in this discussion is that with all the work in this study, all the potential for advocacy, the only number that usually gets discussed is the overall prevalence. Watch the video abstract (which I can’t get to embed). One of the authors goes into a lot of detail about the other findings. Findings I hope to discuss soon.

//players.brightcove.net/1327978102001/rkA3rSifl_default/index.html?videoId=5839990273001
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By Matt Carey

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