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Children with Autism Deserve Education, but I don’t support C.A.D.E.

17 Jun

There is a charity called “Children with Autism Deserve Education“. C.A.D.E or CADE for short. I ran across them a few years ago and saw some expenses in their tax forms that I felt were, let’s say, interesting. So they stuck in my mind and I decided recently to check into them again.

The name suggests a strong focus on education. I know many who will take issue with the use of “with” autism. That aside, helping autistic kids get access to education is a good thing. The vast majority of the money I donate to charity goes to exactly that cause–providing education opportunity for autistic kids.

The tax records indicate that C.A.D.E. spends a lot of money on non educational projects. On alternative medicine, for example. It looks like they’ve spent money on vaccines-cause-autism research. And if I were donating money just based on the name of the org, I’d not be happy with that.

To be clear, C.A.D.E. is public about their support for non educational projects. That “medical interventions” and research into causes are part of their agenda.

Before we dive into the details of where money is spent, let’s take a look at how they present themselves to the public. If one goes to the C.A.D.E. website and checks the “about” page, the first thing one sees is this:

About C.A.D.E.
Helping Children With Autism Reach Their Full Potential Through Financial Support For Evidence-Based Education And Therapy.

More and more children in the United States are diagnosed with autism. In fact, 1 in every 59 children was identified with autism spectrum disorder in 2014—up from 1 in 150 in the year 2000.

While opportunities for high-quality therapy and educational resources are increasing to account for this growing prevalence, intensive treatments are often well beyond a family’s financial means and many public schools don’t have the resources to provide them.

According to a 2014 study, the total lifetime cost of supporting an individual with autism is an astonishing $1.4 million in the United States. If an intellectual disability is also present, the total rises even more to $2.4 million. Education alone can cost a family an extra $8,600 per year.

We Believe That Children With Autism Deserve To Obtain The Most Effective Means Of Education.
C.A.D.E. Exists To Help Them Access It.

Through grants, C.A.D.E. helps fund evidence-based education, therapy and medical interventions for children with autism that don’t have the financial resources. Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.

From my perspective, this sounded reasonable right up the the phrase “medical interventions”. Education is a worthy goal. Therapy can include speech and language therapy, for example.

“Medical interventions” tells me that they are probably supporting alternative medicine. Many in the autism community promote alt-med and this is a common way that they phrase it when trying to seem more legitimate. But a casual reader might not realize that this phrase opens the door to donations being spent on “treatments” that are generally considered unproven or ineffective.

But keep reading the about page and towards the bottom of the page you find:

Our founders, board and volunteers have personal family experience with autism, and are deeply committed to ensuring that children are able to access the education and medical treatments they need to live healthy lives—as well as supporting organizations exploring the causes of and interventions for this epidemic.

So, yes, they are making it public that the money donated will not all go towards education. But consider further the phrase “supporting organizations exploring the causes of and interventions for this epidemic” sounds like the usual code in the autism parent community for “supporting research which tries to support the idea (failed idea) that vaccines cause autism”.

Two questions come to my mind when I read this. First, are they actually spending money on vaccines/autism research. Second, would they lose donors if this were made more clear in their public statements? Would, say, “Children with Autism Deserve Education and to be subjected to Alternative Medicine” get the same level of donations?

I am particularly suspicious of C.A.D.E. because I know that one of the board members is Jennifer Larson. Ms. Larson is prominent in the “autism is a vaccine epidemic” and the alternative medicine communities. She owns at least two businesses that provide alternative medical services (the Holland Center and Minnesota Hyperbaric). She donated $40k to former congressional representative and committee chairman Darryl Issa. At that time he was hosting hearings on vaccines and autism. She also founded the tiny Minnesota based “Canary Party“.An early version of the Canary Party’s website states:

American children are over vaccinated and over medicated, over fed, undernourished and have record levels of chronic illness and developmental delay.

Emphasis added.

We can get more information from the public tax records. The most recent tax year for which I can get records (tax forms for charities are public record) is 2017. Here’s their tax form for 2017. More specifically, here’s the schedule O for 2017. Schedule O is where charities list “grants and similar amounts paid”. It’s where you can find a lot about where they are spending their money, aside from operating expenses and salaries and the like.

Let’s take a look at the schedule O entries sorted largest grant to smallest:

First we have “family assistance for medical and therapy paid directly to the provider”. Said provider is the Holland Biomedical Clinic. And they note that the Holland Biomedical Clinic is owned by a board member. Which appears to be Jennifer Larson. The Holland Center provides both ABA (which can be considered educational) and alternative medical (biomedical) treatment. This entry specifically says “Holland Biomedical Clinic”. So my guess is that this wasn’t for ABA. To my knowledge, the Holland Center is a for profit business, not another charity.

This was the largest grant given out this year by C.A.D.E.: $15,282.

Next we have a grant for $10,000 to Ken Stoller, M.D. as “Family assistance for medical and therapy paid directly to provider”. Ken Stoller is well known in the alt-med and anti-vaccine communities. It seems odd to me that the amount is an even $10,000. Odd as in, did the the bills for a family actually come out to an even $10k? Even more odd that a doctor in San Francisco is getting a grant I thought were for local families in Minnesota. The famous name alt-med autism doctors do get patients traveling to see them. We don’t know what medical services were purportedly provided for this grant, but it seems unlikely that he could provide something not available in Minnesota. So, the question in my mind was whether this was a specific grant for specific families, or was this some sort of general support for Dr. Stoller?

The next “family assistance for medical and therapy paid directly to the provider” is to the Lovaas Institute for $5,390. This would be on target for the C.A.D.E mission, as the Lovass Institute is a provider of ABA services.

Another “Family assistance for medical and therapy paid directly to provider” is to “Grantee Name: Minnesota Hyperbaric. Grantee relationship: none.” Amount was $4,000. Minnesota Hyperbaric is, I believe, a business owned by Jennifer Larson (board member of C.A.D.E.) and housed within the same Holland Center noted above. Which if true would make the “grantee relationship: none” statement a bit problematic.

There is a $3,000 entry for “family assistance for medical and therapy paid directly to the provider” where the provider is listed as “Laidas”. I can not find who “Laidas” may be. I wonder if this is somehow a misspelling for Lovaas?

Next is Autism Recovery Foundation. Two entries for $2,000 total. The Autism Recovery Foundation is primarily focused on ABA. Yes, there are those who oppose ABA, but this is, in my opinion, spending funds on education. Note that Jennifer Larson is on the board. These appear to be described elsewhere in the tax form as “DIRECT SUPPORT TO ORGANIZATIONS THAT HELP FUND EDUCATION AND AWARENESS OF TREATMENT OPTIONS FOR AUTISM.”

Another “family assistance for medical and therapy paid directly to the provider” grant was paid to James Neubrander, M.D. for $1,410. Dr. Neubrander is an alt-med practitioner in New Jersey.

By the way, take a moment and check out his website. Watch the images that flash by and read the messages. It’s not pleasant at all.

The New Bridge Clinic received a grant for “family assistance for medical and therapy paid directly to the provider” in the amount of $1,190. I believe that is this clinic, which is another provider of alternative medical treatments. This is not educational.

Lastly we have “family assistance” paying rent for a family in need. Paid directly to Chohan Properties. For $1,180. While not educational, I wouldn’t have a problem with this.

A quick summary of the grants which appear to me to be for alternative medicine providers:
Holland Biomedical: $15,282
Dr. Ken Stoller (California): $10,000
Minnesota Hyperbaric: $4,000
Dr. Neubrander (New Jersey): $1,410
New Bridge Clinic: $1,180.

The total for Schedule O is $43,452
The amount paid for alternative medical providers appears to me to be $31,882. Or about 72% of the total grants.

72%

I would be very unhappy were I donor and found that out. It’s not illegal. It is, in my opinion, misleading. I’d think an org named “Children with Education Deserve Education” would be spending my donations on, well, education.

All the above is just for tax year 2017, the most recent where the information is publicly available. What about the other years? I went through the tax forms I could find going back to 2010. Here’s a summary table:

Who are they giving money to? Here are the top 10 projects, by money committed, from what I can see:

1) $56,000: The Autism Treatment Foundation of Minnesota, which appears to be this organization. Jennifer Larson is currently on the board. This org supports ABA for autism, and would be considered on target for “education”. From what I could find this appears to be something like a lobbying organization.

2) $22,000: Generature Rescue. Widely considered an anti vaccine organization. I’m unaware of any education projects they’ve been involved in. They are mostly involved in promoting the failed idea that vaccines cause autism and also promoting alternative medicine for autism. However, it struck me that in 2010 Generation Rescue made a big ($100k) donation to Andrew Wakefield’s “Strategic Autism Initiative” (Mr.Wakefield was the top in Time Magazine’s list of research frauds). In my opinion the SAI was set up to provide support for Mr. Wakefield after his ouster from Thoughtful House. This raises the question in my mind–did C.A.D.E. send money to Generation Rescue as a way of providing funds to Mr. Wakefield? Jennifer Larson is a known supporter of Mr. Wakefield.

3) $19,678: University of Northern Iowa. researchers DeSoto and Hitlan at the University were prominent in the “vaccines cause autism” scene for a few years. The work was poor in my opinion. Prof. DeSoto lists $80k in grants from C.A.D.E. for “Study of Autism among Somali Immigrants in MPLS, MN Area.” Her vitae does not list any publications. There was great interest from the anti-vaccine community in the Minnesota Somali community. Besides apparently accomplishing nothing, this expense by C.A.D.E. appears to have nothing to do with education.

4) $15,282: Holland Biomedical Clinic. This is reportedly owned by Jennifer Larson. The clinic offers alternative medical approaches. An initial visit can run $995, and alternative medicine is rarely covered by insurance.

5) Autism Recovery Foundation. Same address as the Autism Treatment Foundation of Minnesota. ABA based. Would be on target for donations to “educational” orgs, in my option.

6) $12,102. Unnamed medical therapy. Unclear what this was spent on, although it’s a good guess it was alternative medicine.

7) $10,000. Autism Resource Network. Looks like it was a store (autismshop.com). Which had a leaning towards the failed “vaccines-cause-autism” idea.

8) $10,000: Dr. Ken Stoller. Discussed above. Dr. Stoller is well known in the anti-vaccine community. And is in California, not MN.

9) $9,380: The Holland Center. Discussed above. Business reportedly owned by Jennifer Larson. Largely ABA focused, but also houses the Holland Biomedical Clinic and Minnesota Hyperbaric. One of the entries was for iPads. Why they were distributed through Ms. Larson’s business rather than directly is unclear.

10) $7,661: iPad purchase. iPads are often used as alternative communication devices and otherwise educational devices by people with disabilities.

There are a lot of expenses above which, again, I wouldn’t be expecting on donating to a charity calling itself “Children with Autism Deserve Education”.

One last comment. Above you will find this quote from C.A.D.E.: “Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.” I find that hard to believe. I count about $112k spent on program expenses from 2014-2017. So unless they spent a lot more money in the past 2 years, $500,000 seems like much more money than they’ve spent. Perhaps I’m missing something in the tax documents. I’ll provide them below.

C.A.D.E. fundraises with a run (the Autism5k) and also golf events.

One last topic is interesting here. Here’s a copy of an older form they used to apply for their grants. The CADE Medical & Therapy Grant Application. They specify some interesting requirements:

“These grants are for CADE approved physicians & CADE approved therapy programs.”

“I understand that my child is required to follow the GF/CF diet or SCD diet for the 90-day grant period if the medical grant is awarded and the diet is recommended”.

“I understand that an approved Doctor will be assigned to my child and that I have no choice in this matter and cannot change the assigned doctor. This doctor will be a specially trained for autism. ”

“If you are chosen for the CADE Medical or Therapy grant, you agree to the following:” which includes: “Implement ASD diet such as GF/CF or SCD for the medical grant ” and “Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed.”

First off, keep in mind that Jennifer Larson also helps run an organization called “HealthChoice.org”. Given that, I find the lack of choice in the above quote very ironic. You must follow a diet for 90 days. One must follow the doctor’s recommendation, even if one disagrees. The doctor is ” assigned to my child and that I have no choice in this matter and cannot change the assigned doctor”

Yeah, that’s health choice.

Second, they ask for a lot of information. Including one has to keep a log and take pictures/videos. I would be very worried if I were to see such an application that the org was thinking of some sort of study based on the kids going through the grant program. That would be highly unethical.

Under “Disclaimer” the application states:

If you are chosen for the CADE Medical or Therapy grant, you agree to the following:
• Implement ASD diet such as GF/CF or SCD for the medical grant
• Dropping out of the program once selected will make you liable for the following:
1. All postage costs
2. The fee(s) of 2(two) Medical visits (estimated at $750.00)
• Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed. 

All dollars for therapy grants go directly to the provider.

So, where the application previously stated that a diet is required if “recommended”, here the parent is accepting that it they will implement a diet. And, let’s say you think the medical professional isn’t working out for your kid, and/or the diet isn’t helping (or is even bad) for your kid. You get to pay back $750. Remember, parents are selected based on need. So $750 (which by the language reads as though it could be assessed even if you didn’t actually go to one or both of the visits) is possibly enough to force a parent to keep his/her kid in the program.

And, as we saw above, sometimes the grants are paid to clinics run by one of C.A.D.E.’s leadership.

As I titled the article, I believe strongly in doing more to provide better educational opportunities for autistics. But after going through all the above research, I wouldn’t send any of my money to C.A.D.E.. Sadly, this makes me wary of most charities. Especially small charities where it’s unlikely that there is much oversight.

Below are the tax forms for years 2010 to 2017 if you wish to check for yourself. If you find any mistakes in what I reported above, please let me know.

CADE_2017
CADE_2016
CADE_2015
CADE_2014
CADE_2013
CADE_2012
CADE_2011
CADE_2010

By Matt Carey

Trump is only the latest charlatan to use the anti-vaccine community

15 May

When Donald Trump was running for president (has he ever stopped running for president and started governing?) the anti-vaccine community threw full support behind him. They were excited because here was a candidate who publicly accepted and promoted the fake and damaging idea that vaccines cause autism.

Before running, Trump supported the idea that vaccines cause autism in twitter. During the campaign he stated his support for this failed idea clearly in a debate. So it’s no wonder that the anti-vaccine community backed him.

Then, a few weeks ago Trump said this, in response to the recent measles outbreak:

“They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots.”

That didn’t sit well with the various anti-vaccine groups. But allow me to take a moment to look at the viewpoint during the campaign. In specific, think about this–while campaigning did Donald Trump appear to be a candidate who would do well by the disability communities? Would someone like my kid benefit from a Trump presidency?

Clearly not. It’s not even a close question. And yet, even autism-parent anti-vaccine activists were pro Trump. Even though life would be harder for their kids after Trump. Even though there would be less support for their kids. Even though Trump would heighten stigma of disability.

One would think that parents of disabled children would run to vote for anyone else. Anyone who even paid lip service to supporting their children.

But the anti-vaccine autism parents didn’t. And I wasn’t surprised.

These are the same parents who:

chelated their kids (even though autism looks nothing like mercury intoxication, could cause harm and in at least one case did cause death)

dumped synthetic chemicals mislabeled as as “supplement” on their kids’ gluten free waffles.

promoted bleach enemas for “treating” autism

injected children with filtered urine

chemical castration of disabled children as a purported “cure”

The list goes on and on. But what do all of the above “therapies” have in common? OK, what do they have in common besides being bogus? They are all promoted by people who say vaccines cause autism.

So I wasn’t the least bit surprised that the anti-vaccine autism-parent community backed Trump. Not for a moment.

Remember back during the campaign when JB Handley (anti-vaccine activist founder of the Age of Autism blog) wrote Trumps Stands with my Son, I Stand with Trump

In it he stated:

But, I will make the point to you anyway: Donald Trump is the best thing that has happened to our kids in a very long time and I hope we can all lay down our issues and stand with him.

Because Handley is a “one issue voter” and that issue is the (failed) idea that vaccines cause autism

Did it matter that Trump had no plan for supporting people with disabilities?

Did it matter that Trump openly mocked people with disabilities?

Did it matter that Trump didn’t have the backbone to actually apologize for such a crude attack, stigmatizing disability?

Did it matter that Trump was pushing to remove the Affordable Care Act, which has allowed many autistics to get medical insurance? As part of that push Trump wanted to remove coverage for people with pre-existing conditions? One would think that pre-existing condition coverage would be a priority for Handley and the anti-vaccine community.

Did it matter that Trump was planning to gut funding for support services for people with disabilities?

Or, to put it simply, did the anti-vaccine community actually put people with disabilities in into their decision to support Trump? No. Not even close.

Trump said vaccines cause autism. And with that Trump got their vote.

Did Trump ever stand with any autistic? Anyone’s child? Anyone’s son? Nope. Trump stood with the anti-vaccine activists themselves.

And now Trump has abandoned them. It may only be for now. But the anti-vaccine community isn’t large enough and the sentiment against them is rising.

Here’s a response to Trump from Kim Rossi at the Age of Autism blog:

From an MSNBC report yesterday: President Donald Trump commented on the recent measles outbreaks, saying that people “have to get their shots” and called vaccinations “important.”

Will the First Lady share her children’s vaccination status, please? We would have like to have seen the Obama girls’ records too. No partisanship here at AofA. Both sides of a rotten apple with a pharma profit core.

Trump is now part of the “rotten apple with a Pharma profit core”.

No partisanship, eh Kim? I guess you finally realized that being a charity (the Age of Autism converted to a charity a few years ago–before the election) actually means having to follow the laws imposed on charities. Like abandoning the clear partisanship you showed in promoting Trump’s candidacy.

So Kim…JB…and the rest of you: Trump fooled you. Did you stop for a moment and think, “wow, I can be fooled. I wonder who else has fooled me in the past and who is still fooling me now?”

I doubt it. And that’s too bad. You all could do a lot to undo the harm you’ve caused.


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.

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

One line from the CDC Autism Prevalence report you will likely never see quoted

28 Apr

The CDC came out with an autism prevalence estimate a few days ago. There have been a number of news stories on the subject and the usual attempts by credulous websites to use this to claim that vaccines cause autism.

It’s right there at the top, in the interpretations section of the abstract:

Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States

The Age of Autism blog (as noted already, always a good place to look for people getting it wrong on autism) ran a piece “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?” Because, you know, claiming an epidemic is in their mission statement.

SafeMinds, another organization promoting the failed “vaccine-induced-epidemic” idea of autism wrote:

Baltimore, MD, April 26, 2018 – SafeMinds, along with other national autism advocacy organizations, sent a letter today to Department of Health and Human Services (HHS) officials demanding a meeting within the next 30 days to discuss the creation of a Federal Autism Strategic Plan to address the nation’s autism crisis. The urgent letter follows the release of a report this afternoon by the U.S. Centers for Disease Control (CDC). The CDC report found that autism is now diagnosed in one in every 59 American children, representing 2 ½ times more autism in 12 years and a 15 percent increase in just two years.

First, there is an Autism Strategic Plan. A member of SafeMinds helped craft it with HHS while she was on the Interagency Autism Coordinating Committee. She voluntarily decided not to pursue another term on the IACC.

Second, your reason is that ” The CDC report found that autism is now diagnosed in one in every 59 American children”. The CDC told you explicitly in the first few paragraphs that can’t be said.

But I do appreciate that you are implying no epidemic among children. You clearly state that the rate is the same for all American children, not just the 8-year old children of the CDC study. Or did you miss that important point?

So, good luck with that letter. I’m sure your readership will not notice the problems with your logic, but HHS will.

There are more examples, but these make the point.


By Matt Carey