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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

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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

Why are Robert Kennedy Jr. and Wakefield’s Vaxxed team allying with someone who spreads holocaust denialism?

31 Mar

Simple answer: because she’s anti vaccine.

But I’m sure readers would like a bit more detail than that. Today Robert Kennedy Jr. spoke at an event for vaccine antagonistic activists. On the list of speakers: Sherrie Saunders. Ms. Saunders has been part of Andrew Wakefield’s “Vaxxed” team for some time.

Here are some posts from Ms. Saunders’ facebook feed. She’s “educating” her readers with writings from a “fb historian”. I will post screenshots for the most part as this is disgusting material.

Here’s one post. And a screenshot of the start of the post:

That post includes a paragraph from the “Protocols of Zion”. Here’s the start of the Wikipedia page on the Protocols of Zion:

The Protocols of the Elders of Zion (Russian: Протоколы сионских мудрецов) or The Protocols of the Meetings of the Learned Elders of Zion is an antisemitic fabricated text purporting to describe a Jewish plan for global domination. The forgery was first published in Russia in 1903, translated into multiple languages, and disseminated internationally in the early part of the 20th century. According to the claims made by some of its publishers, the Protocols are the minutes of a late 19th-century meeting where Jewish leaders discussed their goal of global Jewish hegemony by subverting the morals of Gentiles, and by controlling the press and the world’s economies.

Again, the so-called “Protocols” are a racist fraud.

That same post includes a picture of Hitler with text entitled “Hitler knew who the real jews were”. I will not copy it to this site.

Here is a screenshot of another of her posts from that day (link). Again, “via Fb historian”. It’s more of the same. One of the pictures with that post is again of Hitler, with the caption: “They told you we were the monsters. We were the last warriors who fought the satanic jewish banking cartel that rules you today.”

Another of Ms. Saunders’ pages from that day is entitled by her “AGENDA OF THE ZIONIST MOVEMENT” (link).

So, Robert Kennedy, why are you associating with this person?

So, Andrew Wakefield, why are you associating with this person?

So, Polly Tommey, why are you associating with this person?

So, Brian Hooker, why are you associating with this person?

So, Barbara Loe Fisher, why are you associating with this person?

Surely if the information she has is valid, you can find someone to present it who doesn’t share such offensive lies as these.

By Matt Carey

Study claims gluten free diet leads to higher levels of heavy metals like mercury

6 Mar

One of the purported treatments for autism is the Gluten-Free/Casein-Free (GFCF) diet. Studies have failed to find a benefit, but the idea persists. Especially among those who believe that autism is a vaccine injury (it isn’t) and that mercury in vaccines contributed to the rise in autism rates (it didn’t).

So there is a huge irony in the possibility, as a recent study suggests, that people on a gluten-free diet have higher levels of mercury and other heavy metals

The study is The Unintended Consequences of a Gluten-Free Diet.

The full study doesn’t appear to be available. This looks like a conference abstract.

That said, check out this table:

table

Total mercury in the blood is 1.7 times higher in people in the gluten-free diet group than in the overall population.

Now, it looks like the units in the table are ng/l, so a total mercury level of 1.3ng/l (that in the gluten-free group) is still well within the normal range (<10ng/l).

Of course it is also worth mentioning that those who promote the gluten-free diet for autistics often have the attitude that no mercury level is safe (which is tough, since there is mercury at some level in just about everything).

So, yeah, ironic but not dangerous. By pushing the gluten-free diet, people may have pushed autistic kids into higher levels of mercury in their blood.

Do we expect Robert Kennedy, SafeMinds, Mark Blaxill, JB Handley, Generation Rescue or any of the others in what was once called the “mercury militia” to inform their groups about this? Sure, if they are really about autism and not about attacking vaccines.

Which is to say, I doubt it.

By Matt Carey

Yes, California children are dying of measles. Today. It’s called SSPE. Andrew Wakefield, Del Bigtree, Polly Tommey, stop lying about it.

2 Nov

One of the very frustrating aspects of the vaccines-cause-autism myth is that my community–autism parents–are largely responsible for spreading the misinformation and the fear. One need only look at Jenny McCarthy, Generation Rescue, the National Autism Association, TACA (Talk about Curing Autism), Polly Tommey, and almost any online discussion about vaccines to see the misinformation being spread by autism parents.

Listen to someone spreading the fear about the MMR vaccine and you will almost always hear, “measles doesn’t kill”. I’ve heard it a number of times from Andrew Wakefield. Remember him? He’s the guy whose unethical research 20 years ago fueled the fear we have today. His current effort is a fake documentary called “Vaxxed”. His team includes Del Bigtree (a former actor and low level producer for daytime TV) and Polly Tommey (an autism parent and Wakefield ally). As part of their PR tour for their film, they’ve given a number of personal appearances and posted video to Facebook. Watch them a few times and you will see Wakefield’s team–especially Del Bigtree–that measles is not a fatal disease. That no one has died of measles in California, they say. Del Bigtree focuses on California a great deal. He’s from California. California had a sizable outbreak recently and, partially as a result of that, changed their laws on vaccines for students.

Del Bigtree is wrong, as he usually is. Measles does kill. The death rate in France over the past decade has been about 1 in 2000, And that’s the number for people killed during the infection. The recent outbreaks in California have not resulted in immediate deaths, but we haven’t had outbreaks as large as those in France. However, measles is killing people in California right now. It’s killing them with the long-term infection called SSPE. People in California have died in recent years, and one is currently dying of SSPE. SSPE is incurable. It’s a slow, agonizing death.

Want more facts about SSPE?

What is Subacute Sclerosing Panencephalitis?
Subacute sclerosing panencephalitis (SSPE) is a progressive neurological disorder of children and young adults that affects the central nervous system (CNS). It is a slow, but persistent, viral infection caused by defective measles virus.

and read more from that same site:

What is the prognosis?
Most individuals with SSPE will die within 1 to 3 years of diagnosis. In a small percentage of people, the disease will progress rapidly, leading to death over a short course within three months of diagnosis. Another small group will have a chronic, slowly progressive form, some with relapses and remissions. A very small number (approximately 5 percent) may experience spontaneous long term improvement and regain lost function. Prevention, in the form of measles vaccination, is the only real “cure” for SSPE.

You can read more but here’s what we are talking about: in addition to the people who die from measles infections, measles infects the brain in some people and they die. They die over years, slowly losing function. Spending years knowing death is coming.

And a recent study shows that SSPE has been happening in California. People have died in recent years. Someone is dying right now of SSPE.

There are a number of news stories about this. Below is the abstract from the conference.

Subacute Sclerosing Panencephalitis: the Devastating Measles Complication is More Common than We Think

Background: Subacute sclerosing panencephalitis (SSPE) is a fatal complication of measles. Thought to be rare, SSPE incidence decreased with routine measles vaccination, but infants with measles remain at highest risk of this complication. We reviewed SSPE cases in California from 1998-2016 to understand current risk factors for SPPE.

Methods: SSPE cases had a clinically compatible illness and either 1) measles IgG antibody detection in the cerebrospinal fluid; 2) characteristic pattern on electroencephalography; 3) typical histologic findings in brain biopsy; or 4) medical record documentation of SSPE-related complications. Cases were identified though a state death certificate search, reports from the Centers for Disease Control and Prevention, or through investigations for undiagnosed neurologic disease. Measles IgG detection was performed using indirect enzyme immunoassay at the California Department of Public Health (CDPH) or by immunofluorescence assay at clinical laboratories.

Results: Seventeen SSPE cases were identified. Males outnumbered females 2.4:1. Twelve (71%) cases had a clinical history of a febrile rash illness compatible with measles; all 12 had illness prior to 15 months of age and measles vaccination. Eight (67%) children were living in the United States when they had measles. SSPE was diagnosed at a median age of 12 years (range 3-35 years), with a latency period of 9.5 years (range 2.5-34 years). Many cases had long-standing cognitive or motor problems prior to diagnosis. Among measles cases reported to CDPH during 1988-1991, incidence of SSPE was 1:1367 for children < 5 years, and 1:609 for children < 12 months at time of measles disease.

Conclusion: SSPE cases in California occurred at much higher rate than previously published among unvaccinated children who were infected with measles in infancy. Protection of infants younger than 12-15 months of age, when measles vaccine is routinely administered, requires avoidance of travel to endemic areas, or early vaccination prior to travel. Clinicians should be aware of the possibility of SSPE in patients with compatible symptoms, even in older patients with no specific history of measles infection. SSPE demonstrates the high human cost of “natural” measles immunity.

Let’s pull that last sentence out for emphasis:

SSPE demonstrates the high human cost of “natural” measles immunity.

The study above is based on something called data. Del Bigtree bases his arguments on a Brady Bunch episode.

No, I’m not making that up, Del Bigtree claims that since there was a Brady Bunch episode about measles, it must not have been a big deal in the 1960’s. That’s about as logical as saying, “well, there was this TV show about being in the Marines called ‘Gomer Pyle’. So, obviously, the Vietnam War was no big deal.”

I have zero belief that Del Bigtree (or Jenny McCarthy, Generation Rescue, the Age of Autism blog, Andrew Wakefield, or any of the rest) will change their claims that “measles is no big deal”. Why? Because Del (and the rest) are cowards. It takes guts, serious courage, to stand up and say, “I was wrong”. It takes guts to break from your community and say, “people, this position is dangerous”.

It takes the sort of courage that Del Bigtree and the rest just do not have.


by Matt Carey

There was a big legislative battle here in California last year, where the hell were you faux autism advocates?

26 Oct

This past year we have been fighting a big battle here in California.  We were fighting to restore some of the services funding we’ve lost over the preceding years.  We were trying to get a 10% increase in services funding, which wouldn’t make up for what we’ve lost over the years, but would be a big step forward.

This was a long fight, and one that we didn’t initially win. Even though we fought hard from the start, the budget did not include any increase for disability services. We could have used some help, more voices from the advocacy community. Even though we lost at first, advocates kept trying and finally got a 7.5% increase.   And that’s a victory.  The Arc of California/United Cerebral Palsy were working hard organizing the effort, organizing call in campaigns, fax campaigns and in-person activism in the state capital.  Other groups, such as the Autistic Self Advocacy Network were also helping, as were others.

But here’s the thing: you wouldn’t know any of that if you were only following the vaccines-cause-autism focused groups and people.  These groups claim to be autism organizations. Many of them based on California. We have an individual, a doctor, who claimed to represent “all the autistic students in California”. We had people making a fake documentary dishonestly pushing the idea that vaccines cause autism. Including people who live in California. People, organizations who did nothing to help in this very real effort to improve the lives of people with disabilities in California.

The thing is, these groups and people were very active lobbying for change. They mounted a large, loud, self-destructive effort to stop a vaccine bill here, SB277.

Yes, instead of doing anything, anything at all, to work towards restoring lost services funding, they were lobbying against a vaccine bill.  Not “lobbying against a vaccine bill and working for a restoration of services.”  Just lobbying against a vaccine bill.

By the way, “lobbying” is a very nice term. They fought, and not in the good sense of the word. They fought a nasty, dishonest fight. And lost. Hard.

Or to put it simply, they were wasting their efforts.  Working like vaccine antagonistics, not people interested in a better life for people with disabilities.

Let’s go through a partial list of those who failed in this effort.

The Age of Autism blog.  Article after article on the vaccine bill.  Nothing on the budget battle that I can see.  They are still going on about their failed efforts, harassing the legislator who spearheaded the bill.  AoA writer Kent Heckenlively lives here in California.  AoA founder JB Handley used to live here.  Kim Stagliano there wrote about the lack of adult services, blaming the lack of of services on people pushing for acceptance.  Here’s the thing, Kim, and sorry for how direct this is.  You’ve wasted over a decade running a blog that diverts efforts away from critical areas.  You aren’t just wasting your time, you are making other people focus their efforts away from making those adult services we so desperately need.  And this is not even counting your whole blog actively denying the existence of undiagnosed autsitic adults.  You know what?  If legislators knew there were a lot more autistic adults they just might be interested in doing something.  Tell them that there’s an “epidemic” coming along, hitting when some other legislator is in office, and they do nothing.

Robert “Dr. Bob” Sears.  You were perfectly willing to advocate, but just not for this bill?  Seriously, you took time off work to fly up to Sacramento and claim you represent all autistic students in California, but only to fight a vaccine bill.  Here’s the thing “Dr. Bob”, autistic students need advocates who are going to get them more services.  If you really think you represent all autistic students, you failed.  Failed hard.  Because I never saw you do a damned thing for kids. I never saw you do anything to help improve services.

Andrew Wakefield, Del Bigtree, Polly Tommey and the rest of you behind the fake documentary “Vaxxed”. Bigtree, you live here. Apparently you have no real connection to the disability community, just the vaccine-antagonistic groups. I hope so, because your disregard for our needs is striking. Wakefield, you have been a self-serving leach on our community for two decades. Expecting you to actually do something of value is something I gave up upon many years ago. Bigttree and Wakefield, you are using us, causing harm and giving nothing in return. Polly Tommey, you should know better. You should be doing something real, not just putting out junk films (apologizing for the brutal murder of Alex Spourdalakis? Shame on you, Polly Tommey). But, hey, you get paid to make a film that attacks vaccines by misrepresenting (let’s just call it what it is, lying) facts.

TACA, Generation Rescue, Jenny McCarthy, National Autism Association (and more): You are based in California. Please tell me I just missed your advocacy to make a real difference for people with disabilities here in California. Please tell me that when I just went over your blogs, I missed the articles calling for your membership to call in to legislators to support the budget increase. You have been downplaying your damaging support of the vaccines-cause-autism failed idea now. Why not actually do something valuable with your efforts? Selling families on fake therapies (stem cell clinics in Cancun, “ion cleanse” to treat autism and the rest), doesn’t count.

It would be one thing if you were just wasting your time fighting losing battles for bad causes. It would be one thing if you were just ignoring the real work that needs to be done. If would be one thing if you were just pulling advocates away from improving the lives of the disabled, pulling them away to attend rallies for useless, failed causes.

At this point you are probably expecting me to say something that amounts to “history will not look kindly on you”. The sad thing is that history will forget you. Will forget the harm you caused. Will forget that when the time came to really stand up and make a difference, you were somewhere else.

No one will remember me either. Or the hundreds of people who really carried the weight of change, both in the budget battle and elsewhere. That’s not what this is about. It’s about making change. Change for the good. I know you’ve convinced yourself that this is, indeed, what you are doing. Good. I also know you won’t change.

The vaccines-cause-autism idea is without a doubt the most damaging belief to have hit the autism communities. The “refrigerator mother” theory is a distant second. The idea that vaccines cause autism causes parents to live a life of shame and guilt for participating in something that didn’t happen. This guilt feeds the charlatans that sell fake “therapies” that are inflicted on children and adults in our community. And as long as these charlatans say “vaccines cause autism”, you never speak out about them. You join them in fake conferences or even host them for conferences where they sell their wares. And you divert advocacy away from topics like the budget battle, from actually improving the lives of people with disability, and instead focus advocacy efforts on fighting a battle you lost over a decade ago.

By Matt Carey

No, Wakefield’s Autistic Enterocolitis Does Not Exist

2 Sep

Listen to Andrew Wakefield talk for a while and he will tell you his work has been replicated. Usually claiming replicated multiple times and around the world. Since he says it, it gets repeated by his supporters in online discussions.

For those who get dragged into those discussions, here is another paper to reference. This one takes on the idea that there is a bowel disease specific to autism. Wakefield’s “autistic enterocolitis”

People have looked and, guess what, it isn’t there. Yes, autistics get bowel disease. Being autistic doesn’t prevent bowel disease. The fact that some do, indeed, get bowel disease isn’t what Wakefield claimed. He claimed a “new syndrome”.

It doesn’t exist.

Here’s the abstract. The group is reputable and, in fact, has expressed sympathetic views towards Wakefield.

Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms.

OBJECTIVE:
Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.

METHODS:
All patients had duodenal biopsies assayed for lactase, sucrase, maltase, and palatinase activity. Intestinal permeability was evaluated by rhamnose/lactulose test and measured by high-performance liquid chromatography-mass spectrometry. Intestinal inflammation was evaluated by fecal calprotectin and lactoferrin levels using enzyme-linked immunosorbent assay and histology.

RESULTS:
Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. Disaccharidase activity was not different in autistic and nonautistic individuals. Fecal calprotectin and lactoferrin were similar in both groups. Differences between lactulose and rhamnose recovery and lactulose/rhamnose ratio in urine were not statistically different in patients with and without autism.

CONCLUSIONS:
The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.

If you are getting ready to write, “but they might not have seen enough kids to find one with autistic enterocolitis”, according to Wakefield, most of the kids his team tested had his “new syndrome”. If that were true, this team would have found it.

Add this to “MMR causes autism” as one of the failed ideas of Andrew Wakefield. Not that he will ever admit it.


By Matt Carey