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An autism parent’s gratitude to the Kennedys for speaking out

9 May

Kathleen Kennedy Townsend, Joseph P. Kennedy II, Meave Kennedy McKean: thank you. We in the disability community owe much to the Kennedy family. We don’t forget the gains in special education and other areas that the Kennedy family championed for us.

With that in mind, it’s been especially hard to watch Robert Kennedy Jr. spread vaccine misinformation. More, it’s been painful to see him use my community, the autism community, as his base and his weapon in his campaign.

I know it took courage to step forward and speak out against the misinformation your family member, Robert Kennedy Jr, has been spreading. Thank you.

For readers who are unaware, members of the Kennedy family wrote a piece published on Politico:

RFK Jr. Is Our Brother and Uncle. He’s Tragically Wrong About Vaccines.

Here’s a paragraph:

These tragic numbers are caused by the growing fear and mistrust of vaccines—amplified by internet doomsayers. Robert F. Kennedy Jr.—Joe and Kathleen’s brother and Maeve’s uncle—is part of this campaign to attack the institutions committed to reducing the tragedy of preventable infectious diseases. He has helped to spread dangerous misinformation over social media and is complicit in sowing distrust of the science behind vaccines.

To the Kennedys: I am a father. I have an autistic child. Robert Kennedy positions himself as an ally, a champion of parents like myself. Let me make this clear: Robert Kennedy does not speak for me. He does not speak for more than a few autism parents. He certainly doesn’t speak my son or other autistics. He has been part of the effort to weaponize fear of disability to frighten people about vaccines. As such, he has added to the stigma my son faces.

There is another aspect to this you may not be aware of: the anti-vaccine community is closely tied to the worst in the alternative medicine movement. Robert Kennedy regularly speaks at autism parent conventions where therapies that can only be called abusive are promoted as “cures for vaccine injury”. Mr. Kennedy could speak out against these therapies. He could stand up and make himself heard and stop this abuse. Instead, he has remained silent.

In a few weeks, Mr. Kennedy will once again be speaking at the Autism One convention in Chicago. Here are some of the therapies that have been promoted at Autism One:

Chemical Castration. Mr. Kennedy’s allies in promoting the failed idea that mercury in vaccines cause autism promoted an idea that Lupron could help remove mercury from the brain, somehow treating autism. Lupron shuts down the body’s production of sex hormones. It’s basically chemical castration. (See Disability Scoop: Chemical Castration Drug Peddled As Autism Treatment). Chemical castration of disabled youth, how can anyone not see this as abuse?

Bleach Enemas. Sounds so ridiculous that it couldn’t be true, right? But there are people, presenting at the same place as Robert Kennedy Jr, claiming that a bleach solution, either as a drink or an enema, can cure autism. Somehow this treats vaccine injury, in their logic. Disabled children are exposed to enough of this bleach (Chlorine Dioxide) that they pass the lining of their intestines. These are called “worms”. It’s abuse.

Unregulated stem cell transplants. Parents have been flying their children to foreign countries to have “stem cell” infusions. This is nothing short of medical experimentation.

Chelation. Mr. Kennedy’s main theme for years involved mercury from vaccines. When my son was first diagnosed, one couldn’t get into an online autism discussion without chelation coming up. Autistic children were misdiagnosed with “mercury poisoning” by various, frankly fraudulent, tests. These tests were used to justify chelation, without the supervision of actual toxicologists. These children were never mercury intoxicated. Animal studies have shown that chelation, applied when there is no intoxication, causes cognitive decline. Think of that, disabled children may have lost cognitive gains because people believed Robert Kennedy’s message.

The list goes on and on. “Autism as Vaccine Injury” is used to sell all sorts of fake and, sometimes, abusive therapies. And no one in the anti-vaccine community, and that includes Robert Kennedy Jr., stand up to counter this movement. Instead they accept these charlatans and frauds as allies. As long as vaccines are blamed, charlatans know they can stand up in places like Autism One and not hear criticism.

Robert Kennedy could have slowed or stopped these abuses. He could have shown courage. Instead he’s been using my community as a weapon in his attack on vaccines.

To the Kennedy family: I know this is tough to read. Believe me, if anything, I’ve downplayed the harm the “vaccines cause autism” message has caused to my community. You are the people who might be able to get Robert Kennedy Jr. to stand up and start correcting the damage he’s help inflict.


By Matt Carey

Today’s measles outbreak, brought to you by Generation Rescue and other anti-vaccine misinformation sources

1 May

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.

–J.B. Handley. Founder of Generation Rescue and the Age of Autism Blog.
March 17, 2010

Kelli Ann Davis. Anyone remember that name? She was a spokesperson and political liaison (or something like that) for Generation Rescue back in the day. As in 10 years ago or so.

I’d be amazed if anyone actually remembered her name. It took me a while to remember her name, but I remembered her. She was a frequent commenter in online discussions on vaccines. News stories and blogs. She really liked to point out that there were pockets of under vaccinated people. Schools and communities with low vaccine uptakes. And there weren’t outbreaks of diseases. This, in her mind, seemed to be evidence that herd immunity was a fake idea. Worthy of scare quotes (“herd immunity”).

Here’s an example I dug up from the Age of Autism blog, circa 2009:

She stuck in my mind. She was so arrogant in her ignorance. So full of her self with her bad logic. And she was spreading misinformation.

I knew it was only a matter of time before the outbreaks did come. Before someone imported something like measles into one or more of these under-protected communities.

I won’t hold my breath waiting for her to come back and take responsibility. I won’t wait for Generation Rescue to accept its role in causing suffering. I won’t expect other purveyors of misinformation to show the backbone needed to admit a mistake.

I will admit I was wrong in one area–I worried that eventually the press would start to realize that a great deal of the misinformation campaign has been waged by a vocal minority of autism parents. That is why I remembered Kelli Ann. Not for the chance to one day say, “I told you so”. I knew that these outbreaks would come. The outbreaks would cause people to suffer, some to possibly endure lasting harm and, let’s hope this doesn’t happen, death. While slowing or blunting the harm from these inevitable outbreaks was a worthy goal in and of itself, I was worried that the autism community would take the blame for people like Kelli Ann. JB Handley. Jenny McCarthy.

I am grateful that this hasn’t happened. So far. But I also think it’s on us, autism parents, to call out the behavior of our own. We need to reduce the misinformation that comes from our community. Be it vaccine misinformation, disrespect of people with disabilities or spreading medical pseudoscience.


By Matt Carey

p.s. Yes, I realize that “anti-vaccination” and “misinformation source” are largely redundant.

Oh no! SB277 is causing autism (except it isn’t)

1 May

When I first started looking online for autism information I was constantly hit with people using public data from California to try to convince me that vaccines cause autism. David Kirby was particularly effective at raising fear. Too bad he didn’t stick around and apologize, as the data now show he was clearly wrong.

Kirby was claiming that the rate of identified autism in California was going up, correlating with more mercury in vaccines. California removed mercury, and autism did not go down. It’s a great lesson. It’s easy to scare people, sell books, get fame. It takes a lot of guts to admit one was spectacularly wrong. Kirby chose the easy road.

That said, we still see armchair epidemiologists trying to make California autism data fit their pet theories. (Yes, SFASA, I’m thinking of you while I write this. But you aren’t the actual topic of today’s post). So I wasn’t surprised to see that people on Facebook were abusing California autism data to scare people about vaccines. You see California passed SB277 a few years ago, eliminating the personal belief exemption for vaccines. In other words, fewer people could opt out of vaccines for their kids. Kids entering preschool (age 3), grade 1 (age 5) and grade 7 (age 11) had to comply with the new law. The kids had to get up to date on vaccines.

Because of this, people are focusing on 3 year olds to see if the data from the California Department of Education indicates a jump in autism People are claiming that the number of 3 year olds in autism category climbed faster than did 4 year olds. And this, of course, means that SB277 caused more kids to get vaccinated and vaccines cause autism. Because everything means vaccines cause autism. (click to enlarge)

(Before one goes too far into this, SB277 doesn’t apply to special education students. So, those 3 year olds didn’t need catch up shots. But, don’t let important facts get in the way of claiming vaccines cause autism.)

When someone makes a claim like that the first thing I think is, how noisy are the data? The second thing I ask myself is, what are they not showing me. In this case, why did they tell us about 3, 4 and 5 year olds and then skip 6 and 7 year olds and show 8 year olds? What happened with those 6 and 7 year olds that they didn’t want me to see? For that matter, what happens with kids older than 8?

So I pulled the data and looked. And I made a table. Because listing these numbers like they did makes it hard to actually compare results. I don’t think they intentionally made it hard for people to compare. I just think they were sloppy. I strongly suspect they were trying to hide something, but not in failing to make a simple table. That all said, here are the number of students in the autism category by age for California in 2015 (pre SB277) and 2017 (post SB277). (click to enlarge)

In the Facebook post we were presented this question:

Other age groups increased 13-15%. What has happened to these poor 3-year olds?

But, we can clearly see that other age groups increased by numbers well outside that 13-15% range. For example, 6 year olds (remember how they just skipped that age group) saw an 18% increase. Not the 24% increase seen for 3 year olds, but a sizable increase. Which might have led a reader to ask, “hey, are these data just noisy?” And, “why didn’t you show me that data point?” Or, “what are you trying to hide?” or “Are you purposely cherry picking to make your point?” Or, “I’ll give you the benefit of doubt and assume you just don’t know what you are doing. Which, given that you believe vaccines cause autism is a very safe bet.”

Let’s keep digging. What does happen with, oh, 16 year olds? OH MY GOD! SB277 caused a huge 22% increase in autism in 16 year olds! That’s almost as big as for 3 year olds! Vaccines are to blame!

Of course, 16 year olds weren’t affected by SB277. They didn’t have to catch up on shots. In other words, there’s scatter in the data. It’s not “Other age groups increased 13-15%” as claimed. It’s “other groups increased between 6-22%.”

Remember how SB277 required older students to get catch-up shots? Like 5 year olds and 11 year olds? 5 year olds were what the Facebook poster used as their baseline, 13% increase. That’s actually below the average increase (which was 16%). How about those 11 year olds? 9% increase. Well below average. So, SB277 caused more autism in 3 year olds, but less in 5 and 11 year olds? Those kids were protected by catch up shots?

No. Let’s say it again–people are trying to put significance on noise. And I think they know it, that’s why they are not showing you all the data. That’s the polite way to say, I think they are trying to mislead you. Maybe they actually believe their claim and, you know, just don’t want you to be confused with all that data that conflicts with their claim. Maybe they believe vaccines cause autism because they have no real skill analyzing data and studies.

There are more important questions here. Questions that actually matter to the autism community.

Go through these data a few times and you should start asking yourself: why does the autism count increase for older kids? 13 year olds in 2015, there were 5874 counted as autistic. 2 years later (as 17 year olds) there were 6084. If autism is obvious, you can’t miss an autistic no way no how, how exactly did 200 or so more of these kids get counted as autistic?

Simple answer–many of these 200 kids were missed before. They were missed. They didn’t get supports and services based on their disability. And this shouldn’t happen. Autism counts, like these, aren’t an accurate count of the real number of autistics in a population. But the fact that autism counts aren’t accurate doesn’t play into the epidemic playbook. This isn’t just a problem for the anti-vaccine community. Yes, they’ve never cared about actually helping autistics. But consider SFASA (San Francisco chapter of the Autism Society of America). That’s a group whose purpose it is to serve autistics. All autistics. No matter whether they have intellectual disability or not. No matter whether they are identified or not. But SFASA denies that autistics have been missed in the past.

Ah, I digress. Back to double checking the anti-vaccine activist claims. So, 3 year olds across the state saw a big jump in the autism count from 2015 to 2017, right? If this is real, then the jump would have to be seen in various locations across the state too, right? For example, in Los Angeles Unified School District (largest in the state), we’d see the same result, right? Simple test. Let’s do it.

LA Unified counted 737 3 year olds as autistic in 2015. They counted 783 as autistic in 2017. That’s a 6% increase. That’s a lot less than the 24% statewide. So if we take the theory that “SB277 caused a jump in autism across the state” then in LA Unified, SB277 is preventing autism!

The anti-vaccine movement has always taken just the data that supports their theory and ignored the rest. They have also always used fear. This is just another small chapter in that story.


By Matt Carey

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.

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.


By Matt Carey

VAXXED pulled in over $1.3M in donations, and most of it went to Wakefield and Tommey’s company

19 Nov

A few years ago Andrew Wakefield (one of Time Magazine’s Great Science Frauds) headed a team promoting a faux documentary called “Vaxxed”. I wrote about this film a great deal at the time, but suffice it to say it exemplified much of what is wrong with the way the anti-vaccine community uses and abuses the autism community.

If memory serves, VAXXED concluded with a long list of sponsors. So they apparently had a fair amount of money to work with to produce the film. The film was a product of the Autism Media Channel, which is a limited liability corporation (LLC) owned by Polly Tommey and Andrew Wakefield, based on tax records. At the same time, Vaxxed was associated with a charity: AMC Foundation. Said foundation is run by Andrew Wakefield with Polly Tommey and Brian Burrowes also listed as directors (at least on past tax forms).

Vaxxed came out in 2016, and nonprofit tax forms for 2016 are now public. Here are the tax forms for 2015 and 2016:

Here is the 2015 tax form.

And here is the 2016 (more interesting) tax form.

There are some very interesting details, but let’s focus on a few. Starting with in 2016 AMC Foundation took in $1,325,098 in contributions and grants. $1.3M. (click to enlarge)

$1.3M. Where did it go? Well, about $207K went to “other expenses”. Of that $50K was travel (they had a bus touring around promoting the movie, but they also had a gofundme campaign to pay for the bus if I recall correctly). Another ~$80k into “other” which doesn’t seem to be itemized. Click to enlarge.

And, then there’s the $1M that was given to the business arm of the Autism Media Channel. Click to enlarge.

As noted above, the Autism Media Channel LLC is owned by Andrew Wakefield and Polly Tommey. So that $1M is roughly $500,000.00 each. Of course, the business has to pay other expenses. For example, one assumes that Del Bigtree was not riding along the tour for free. Also, we don’t know how much of the original expenses for producing VAXXED may have needed to be paid off. Of course, had Ms. Tommey and Mr. Wakefield chosen to pay themselves through the charity arm of VAXXED, we would know the amount. That’s called transparency. Given how large this sum is, transparency would seem to this observer to be a necessity. Also, given how much the VAXXED team complains about lack of transparency, this action strikes me as completely hypocritical. click to enlarge.

Perhaps keener eyes than mine can find where any of the money went to, say, help any of the families who Wakefield and Tommey were so eager to include in videos. Or to perform research on autism and/or vaccines. Or anything that, well, would seem charitable. I guess some would think supporting the next film–by the profit generating business–is a charitable act. By shifting the money to their LLC business, we can’t see how much was paid directly to Mr. Wakefield and Ms. Tommey. Which, in itself, is a practice that bothers me. A prime reason to donate to a charity (rather than, say, offer support for a film directly) is to gain transparency. Note that in 2015, the charity did list salary for Ms. Tommey as well as expense for “FILM PRODUCER. PROGRAM EXPENSES”, which one might reasonably consider as a payment to Del Bigrtree (the producer of Vaxxed). So they apparently chose to stop listing salary/payments in 2016.

Recall that in the past Mr. Wakefield was paid $270K/year at Thoughtful House and, after that job ended, tax records for his charities set his salary at the same annual rate.

I profess to be no expert on taxes or the structure of charitable institutions. In my opinion this transfer of funds is at the very least a questionable practice. Money was collected through a charity–giving donors a tax advantages–and mostly diverted to a business run by the same people as heading the charity. Aside from the fact that I would never willingly let Andrew Wakefield or Polly Tommey get a dime of my money, I personally would not be pleased if money I was donating was handled in this way. But Mr. Wakefield’s supporters have been looking the other way and accepting his excuses for over 20 years. I doubt this will bother many of them at all. If any.


By Matt Carey

Did autism prevalence increase by 20%? (answer: no)

28 Apr

The CDC came out with a new autism prevalence estimate yesterday. Their estimated autism prevalence is 1.68%.  That’s up from the estimate from 2 years ago (1.46%), but lower than a different recent study (2.76%).

I’m going to discuss some minor-league shenanigans.  It’s no surprise that some groups abuse facts and cherry pick data to make political points.  In this case it was useless.  there was no need to cherry pick.  I’ve done a lot of exposing the abuse of facts by some so-called autism advocacy groups.  I don’t get any joy from noting that people in my community are both dishonest and ignorant of science.  But much as that bothers me, it pales in comparison to the lost opportunities.  Millions of dollars were spent on this prevalence estimate alone, but all some groups do is dig for reasons to justify their “epidemic” story and push the long-ago failed idea that vaccines are to blame.

Over the years, news organizations and autism groups have jumped at the chance to put their spin on each new CDC autism prevalence estimate. Over the years I’ve spent a lot of time trying to unspin the takes of groups like the Age of Autism blog. AoA is, well…if you want to see autism done wrong, read the Age of Autism blog. Science, medicine, human rights and dignity, they can be counted upon to get things wrong.

With that in mind I decided the CDC announcement was a time to break my current trend of ignoring AoA. I literally haven’t read it in months. What I saw was both surprising and typical for them. Surprising in that they didn’t even bother to write their own pieces for the new prevalence numbers. Seriously–they just copied a couple of articles from other sites and left it at that.

By the way–this new low-level interest in autism prevalence appears to me to be a general trend–beyond just AoA. Autism is losing it’s status as having intense focus from the US media and public.  The chance to leverage the public’s interest into meaningul change is waning. That’s a far more interesting topic and far more important than this and I want to come back to it in the future.

So, what did AoA post? Big League Politics BREAKING: CDC Reports 20 Percent Autism Increase In Children and Breaking News: 1 in 59 children Born in 2006 have Autism, 1 in 36 between the ages of 3 and 17. What’s going on?. That first one caught my eye. First because in absolute terms, the autism prevalence increased by 0.22%. In relative terms, that’s about a 15% increase.  They could have said 15% and made their point, but why do that when 20% is even more scary?  More to the point–digging just a little into this 20% figure gives understanding that a true advocacy organization could use.

So how did they come to the idea that the autism prevalence increased by 20%? They skipped to page 13 and took one part of one paragraph out of context and, well, cherry picked. Completely unsurprising. They skipped over pages of data showing that we are failing to identify–and, therefore provide adequate services for–autistic minority children.

Sadly, AoA and their allies have spent over a decade denying this huge issue.   The reason is obvious: it doesn’t fit into the “vaccines cause autism” narrative.  So rather than push for better identification and better services for minorities, they’ve sacrificed these communities in for their political message.

It’s disgusting.

They didn’t dig any deeper into these numbers, even though the data were right in front of them. Also completely unsurprising. If they were the sort of people who dig into data and question, they wouldn’t be pushing the idea that vaccines cause autism.   Seriously.

Here’s the section they are relying upon:

Among the six ADDM sites completing both the 2012 and 2014 studies for the same geographic area, all six showed higher ASD prevalence estimates for 2012 compared to 2014, with a nearly 10% higher prevalence in Georgia (p = 0.06) and Maryland (p = 0.35), 19% in New Jersey (p<0.01), 22% in Missouri (p = 0.01), 29% in Colorado (p<0.01), and 31% in Wisconsin (p<0.01). When combining data from these six sites, ASD prevalence estimates for 2014 were 20% higher for 2014 compared to 2012 (p<0.01).

So, if you only pick the states where there were data in both this study (called 2014 because that’s when the data were collected to be analyzed) and the previous (2012) study, you get about a 20% increase (click to enlarge).

But what happens if you ask “why?”  As in, why do these states show a larger increase than the entire group?

I put some numbers in red and bolded them for emphasis. Those are states with lower than average autism prevalences. Take a moment to think about that–the states with low autism prevalences are showing larger prevalence increases than other states. Start with a low number, and you are bound to get bigger percentage increases.

Missouri, Colorado and Wisconsin started out with very low identification rates.  They’ve improved their identification rates. What if someone were to ask, “how did they do that?  Can we use that elsewhere to serve more unidentified autistic children?”

I’m sure the cherry-picking “let’s find a reason to fit this into the vaccines-cause-autism story” groups have already focused on New Jersey in the above figure.  New Jersey stands out–their autism rate increased by about 19% and they have a much higher autism prevalence rate. New Jersey also stands out for another reason: they aren’t lagging in identifying black or Hispanic autistic children:

In New Jersey, there was almost no difference in ASD prevalence estimates among white, black, and Hispanic children. Estimates for Asian/Pacific Islander children ranged from 7.9 per 1,000 (Colorado) to 19.2 per 1,000 (New Jersey) with notably wide CIs.

Wouldn’t it be great if someone were to say, “how did New Jersey close the gap in identifying some minority groups?”

Groups advocating for a better future for disabled people would do that.  People trying to keep the failed “it’s all vaccines fault” idea alive won’t.

Some people will be confused, and understandably so, at this point.  These are “autism prevalence” numbers.  Doesn’t that mean that this is a complete and accurate count of the number of autistic kids in each location?  No, they aren’t.  The people at the CDC are working hard and doing a good job with the information they have.  But this is a review of existing records, not a test of each individual kid.  The CDC have access to medical and/or school records (it varies by location what sort of records they have).

Keep in mind–the CDC autism prevalence numbers aren’t “these are the absolute accurate numbers for how many kids are autistic”. We are missing identifying kids. Doctors are missing autistic kids.  Schools are missing autistic kids. The CDC tries to make up for this by reviewing the records to determine which kids are autistic (i.e. they don’t just count existing diagnoses in the records–they “diagnose” from the records).  But they still miss kids in their counts. We need to get better. The fact that New Jersey isn’t leaving minority kids behind is huge.  The fact that lagging states are catching up is huge.

Doing things right–checking on numbers is hard. It takes time. AoA not only doesn’t take the time to be careful (which is typical for the “vaccines cause autism” groups), they know that it’s the simple message that scares people. “Autism increased by 20%”!!!! It may only take 5 minutes to actually dig and see what’s going on. But that’s five minutes most people don’t have time for.

Which is the long winded way to say:

A lie can travel halfway around the world before the truth can get its boots on

Groups like AoA live and breathe on taking advantage of that.  They were fake news long before the term was coined.

That said, I knew with the new autism prevalence numbers people would misuse them. It’s pretty obvious.  They’ve used that misinformation to drag parents into a world of guilt and shame for being part of vaccine injuries that, in at least the vast majority of cases, didn’t happen.  Even more, the autism-is-a-vaccine epidemic community had the resources for over a decade to make a real difference in the lives of autsitic people. As we watch autism fade a bit from the public’s view, it’s difficult to not cry a bit for the lost opportunity. It’s that, not their failed logic or twisted facts that is why I wrote the above.

By Matt Carey