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Mark Blaxill on the Geiers: they do sloppy work

13 Oct

Mark Geier and, more recently, his son David have been active promoting autism as vaccine injury for over 10 years (Mark Geier has been active as an expert in, and been criticized for his lack of quality work, the vaccine court on non-autism issues for about 20 years). They have written multiple papers, ranging from bad to worse, attempting to argue the case that vaccines (and especially thimerosal) are a primary cause of autism.

There are multiple discussions over the years of the Geiers here on Left Brain/Right Brain, Respectful Insolence as well as many other places. The best work was done by Kathleen Seidel at Neurodiversity.com, but due to a server crash much of that content is not readily available. (although it is worth searching for the cached versions or the versions on the Wayback Machine).

The work of the Geiers is so poor that it has always been a wonder to me that no criticism has come from anyone promoting the idea that vaccines caused an epidemic of autism. It isn’t that those promoting the vaccine-epidemic idea are not bright, leaving me wondering if they are too biased by their beliefs or just unwilling to speak publicly against an ally. But, recall, these are the same people who closed ranks around Andrew Wakefield in the face of clear and proved ethical violations.

If we are to believe Jake Crosby, former writer for the Age of Autism blog, it appears that the tacit approval of the Geiers has, at least in part, been a case of “circle the wagons”. I.e. people defending an ally over speak their opinions. Mr. Crosby has blaxillwilliams and quotes more emails where Mark Blaxill (former board member of SafeMinds and a long-time proponent of the idea that mercury in vaccines are a primary cause of autism) expresses his views about the Geiers to Mike Williams (attorney involved representing the families in the Omnibus Autism Proceeding).

In an email image on Mr. Crosby’s blog, Mr. Blaxill is reported to have stated:

In the interest of full disclosure. I thought you might like to see my critique of the Geiers’ latest work on VSD. I have not been a big fan of the Geiers. I worry they do not represent our side well. They do sloppy work.

In another email (quoted by Mr. Crosby, the link to the original is nonfunctioning) quotes Mr. Blaxill as stating:

“As to the Geiers, I may be a bit of a minority voice here, but I worry very much that they can do our cause more harm than good. They are not very good scientists, write bad papers (both writing badly and reporting in sloppy fashion) and attract too much attention to themselves as individuals. In this last regard, they don’t show nearly as well as Andy Wakefield but they’re trying to play the same role. Frankly, if I were on the other side and were asked to critique their work, I could rip it to shreds. I’m surprised they haven’t been hit harder. So I think you are wise to diversify.”

Mr. Crosby’s stance is that this constitutes “interference” in the Omnibus Autism Proceeding. I.e. Mr. Crosby seems to imply that the Geiers are not sloppy scientists whose work is poor, but that the Geiers should have been allowed a more active role in the Omnibus.

In this case I find myself agreeing, in part at least, with Mr. Blaxill. The work by the Geiers is poor. Where I don’t agree is Mr. Blaxill’s decision to hold back on making those statement public. Not just because it’s hard to take the stance that one is a only “…interested in the quest for the truth” when one holds back on key information like an entire critique of the Geiers’ VSD paper. No. It goes deeper than that. The Geiers’ junk science went beyond promotion of the idea that thimerosal is a primary cause of autism. The Geiers ran a clinic for many years. Mark Geier was a licensed physician, David Geier worked in the clinic (and has been accused of practicing medicine without a license). Through their papers and their talks at autism parent conventions like AutismOne, the Geiers became well known. One of the “brand name” autism clinics. They reached this level of respect within their community because no one within that community dared to speak out.

I’ve noted on Left Brain/Right Brain many times before that these parent conventions differ markedly from real science conferences in that no one ever seriously challenges the speakers. They can present almost any theory or idea, especially if they tie it to autism as vaccine injury, without anyone standing up and saying, “that makes zero sense”. These aren’t science presentations, they are advertisements. It would be interesting to see how many of these conventions Mr. Blaxill attended and yet remained silent on the “sloppy” work that could be “ripp[ed] to shreds” that the Geiers presented. Instead, parents were presented a view that the Geiers were good scientists who suffered unjust criticism for their “brave” stance on vaccines.

The Geiers were promoters of chelation as a treatment for autism. Not only does chelation have no scientific basis to be an autism treatment, a study just out this week using rodents states that chelation could be harmful if there is no real heavy metal toxicity:

Finally, we also found that succimer treatment produced lasting adverse neurobehavioral effects when administered to non-lead-exposed rodents, highlighting the potential risks of administering succimer or other metal-chelating agents to children who do not have elevated tissue lead levels. It is of significant concern that this type of therapy has been advocated for treating autism.

It is highly likely that Mr. Blaxill would disagree with the statement that chelation has no good scientific basis as a treatment for autism. He’d be wrong, but that’s been covered over and over before. The Geiers moved on from standard chelation to stranger, more dangerous therapies. As an aside, if chelation was a successful treatment one has to wonder why the Geiers were prompted to move on to using Lupron as an autism treatment. Lupron is very serious medicine and it shuts down sex hormone production in the body. Why Lupron, one might ask? The Geiers convinced themselves (or convinced themselves that they could pass off this explanation) that mercury bound itself to testosterone in the brain, making it hard to chelate. They cited a paper showing that if one heats testosterone and mercury salts in benzene, one could form these mercury/testosterone complexes. They actually claim (yes, they tried to patent this idea to make money off it) that this paper shows that “It is known in the art that mercuric chloride binds arid forms a complex with testosterone in subjects”. The “subjects” are beakers of benzene, not animals and not people. Add to that the lack of an explanation of how shutting down hormone production would break up these complexes. The Geier “science” supporting Lupron would be laughably bad if it wasn’t used to subject disabled children to Lupron injections.

Lupron clearly has no basis as an autism therapy. In fact, the “lupron protocol” played a major part in Mark Geier losing his medical licenses. One has to ask, how did the get such traction for such an obviously bad idea? For one thing, the Geiers were considered respected scientists in the vaccine injury/alternative medicine autism community due to their previous and ongoing work trying to link thimerosal and autism. Work which Mark Blaxill considered “sloppy” and worthy of being ripped to shreds. But instead of sharing his views on the Geier papers with the public, Mr. Blaxill shared them privately within his own circle.

It’s worth noting that the email quoted above was written before the “Lupron Protocol” was developed. We don’t know if Mr. Blaxill was alarmed by the emergence of the “Lupron Protocol”. I can’t find where he spoke out against it. We can see that his blog (under a different writer) promoted the idea as “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!“. Mr. Blaxill doesn’t seem to have commented there. For all the papers the Geiers have published, Mr. Blaxill only mentions them once in his book “Age of Autism. But as we’ve seen, tacit approval (silence) may not be the same thing as real approval.

Mr. Blaxill had the courage to testify before a congressional hearing last year. A hearing where the politicians had been lobbied in advance to be favorable to his cause. When it came to disagreeing with one of his allies, that courage was lacking. He allowed “sloppy” science from an ally to go unchallenged. An example of the fallout of such a decision, in my opinion had he stood up he could have slowed or even stopped the “Lupron Protocol”, a therapy which in my opinion amounts to the abusive treatment of disabled children in an uncontrolled and unapproved experiment.

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By Matt Carey

Demonstration tomorrow at DisneyLand

9 Oct

Late notice, I know, but I just got an email that a demonstration is scheduled for DisneyLand tomorrow to protest the fact that they are discontinuing the special needs passes.

This from Facebook:

Demonstration and Petition Delivery

Tommorrow, Wed, Oct. 9th at Disney 7-11
10:00 am

611 W Katella Ave
Anaheim, CA 92802

Meet up with your signs, your shirts and your children (only if it will not be upsetting, disruptive or dangerous to them.

I just spoke with ABC News and they intend to show up.
Anaheim Petition is being printed now (we still dont have a Fl person to delivery other copy :/)
SHARE

Per the facebook page, they have 4,000 pages of signatures for the petition. Here is box 1:

box one of the petition

I wish I could be there. Back in the day I worked at DisneyLand. Spent many a day and night in the park. It’s been great for our family to be able to make use of the special needs passes. Without them we just couldn’t do DisneyLand. It’s $400 minimum to go and we only get a few hours. The new system they’ve proposed wouldn’t work for us.
—
By Matt Carey

No, the thimerosal in the flu vaccine does not explain why autism rates did not go down

6 Oct

Surprisingly enough, there are still people promoting the idea that the rise in autism diagnoses observed over the last decades was caused by thimerosal in vaccines. The original argument was this–vaccines were added to the vaccine schedule in the 1990’s and with them the infant exposure to thimerosal increased. Concurrent with this rise in infant thimerosal exposure was a rise in autism diagnoses. Add to this a poorly concocted argument that autism resembles mercury intoxication and you have the basis for the mercury hypothesis.

Thimerosal was phased out of infant vaccines over 10 years ago. Thus, if the thimerosal hypothesis were true, reported autism rates should be declining by now. As far back as 2005 David Kirby (whose book “Evidence of Harm” played a major role in promoting the mercury hypothesis) acknowledged this point in a statement

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

It’s 2013. Autism rates in California have not declined. Not in Special Education. Not in the CDDS roles. And, yes, we are six years past the 2007 deadline that David Kirby gave us.

To be specific, let’s use the same method that David Kirby and others used to claim a thimerosal induced autism epidemic in the 1990’s (namely the California DDS client count–which not a good method, by the way). Autism “rates” have gone up by over 150% since thimerosal was phased out of infant vaccines. The age 3-5 bracket had about 4000 children in 2003 and is currently over 10,000.

CDDS 3-5

So we have more kids in California receiving services under the autism label than when thimerosal was in vaccines.

This is but one in a huge list of reasons why the thimerosal hypothesis doesn’t work.

But let’s go back in time a bit. Not so long ago one would hear proposals that we go back to the vaccine schedule of the early 1980’s when, it is claimed, the autism rate was 1 in 10,000. Fewer vaccines, less thimerosal, less autism. So goes the logic.

Generation Rescue, in fact, used to recommend the 1983 schedule as one of their alternative schedules

Turn back the clock
Comment: This is the schedule from 1983. If it worked for kids then, why doesn’t it work for kids now?”

Does it make sense to go back to the 1983 schedule? No. Why? OK a lot of reasons, but let’s focus on the fact that infants were exposed to more thimerosal in the 1980’s than today. Infant vaccines have no or only trace amounts of thimerosal.  So if thimerosal were the (or even a single) primary cause of autism risk, we would see autism rates lower today. To not only 1990’s levels, but to something like 1980’s reported levels. Assuming that the reported rates in the 1980’s were an accurate count of how many autistics there were then (a bad assumption but it’s the one they use).

To recap–Infant thimerosal exposure from vaccines peaked at nearly 200 micrograms in the 1990’s, up from about 100 micrograms in the 1980’s and is now less than 10 micrograms. And autism rates have not declined at all. Much less to 1980’s levels.

Once anyone says this the instant answer is that there is still thimerosal in some influenza vaccines. This, they say, is why autism rates have not declined. (note that thimerosal containing vaccines, including influenza vaccines, are banned in California for infants and pregnant women…and autism “rates” have continued to climb here).  

For completeness sake, let’s consider a kid who gets the maximum exposure to thimerosal from vaccines. I.e. a non California kid.  A kid who turns 6 months (the earliest age they will give a flu vaccine to a kid) during the flu season.  That kid will get 2 vaccines in the first year (6 and 7 months) then another influenza vaccine each year thereafter. Each with 25 micrograms of mercury from thimerosal. How does the thimerosal exposure compare to the 1983 schedule?  Take a look for yourself (exposures in micrograms of mercury from thimerosal):

1983 schedule 2013 schedule
DPT Inluenza
2 months 25
4 months 25
6 months 25 25
7 months 25
Total by 1 year 75 50
18 months 25 25
Total by 2 years 100 75
30 Months 25
Total by 3 years 100 100

So by age 3, the exposures are the same.  Except that the kid of today gets the thimerosal later and more spread out over time.  As an aside–most people who talk about the rise in thimerosal exposure during the 1990’s neglect to point out that the cumulative exposure in the 1980’s was already 100 micrograms. I.e. the “safe” level was significant.

If thimerosal were the driving force behind the rise in autism diagnoses, we should be back to 1983 levels, misrepresented by those claiming an epidemic as 1 in 10,000.  Instead we are at 1-2%.  The “rates” didn’t go down.

By this point the proponents of thimerosal are basically screaming, “you are forgetting the vaccines recommended to pregnant women!” No, I just put that off until now.  Sure, the influenza vaccine is recommended for pregnant women, but as the CDC notes:

Prior to 2009, influenza vaccination levels among pregnant women were generally low (~15%) (5,9).

So, from about 2000 to 2009 there wasn’t a big increase (or even a large part of the population) getting influenza vaccines while pregnant, nor were their children getting exposures higher than those in the 1983 schedule.

Take a look at that graph for California administrative autism prevalence again. Between 2002 (after the drawdown of thimerosal in vaccines) and 2012 the autism count doubled. Thimerosal exposure was down. A lot. Below 1990’s “epidemic” levels. Back to the 1983 “worked for kids then” levels. But autism “rates” continue to climb.

The people still pushing the idea that thimerosal is a (or even the) primary cause of autism are not unintelligent. We are talking about college educated people. Ivy league schools. A former journalist, an intellectual property expert and more. There is no math above. It’s all quite simple and straightforward. It uses the exact same logic and methodology they used to promote the idea that mercury causes autism. This is where intellectual honesty and basic integrity should kick in and get people to suck it up, admit their mistakes and start repairing the harm they have caused.

I’m not holding my breath.
—
By Matt Carey

Petition Disney to keep the guest assistance passes

25 Sep

Disneyland has a great program where people who have special needs can get support. For one thing, they can avoid the long lines for rides, using special lines. For many, this is the ONLY way they can attend DisneyLand.

Unfortunately, some people gamed the system and now Disney is changing the rules.

There is a petition up. Please read and consider signing:
Disneyland Discontinues Guest Assistance Card for Special Needs Families

For more information, read Please, Disneyland: Do Right By Your Autistic Fans

—
By Matt Carey

One year and $40,000 later and another hearing

14 Sep

Last year the U.S. Congress’ Committee on Oversight & Government Reform held a hearing. The buzz on the web was that this prompted by lobbying by people and groups who promote the idea that vaccines have caused the rise in autism diagnoses. In other words, the hearing was supposed to be a hearkening back to the “good old days” when the Committee under Dan Burton held hearings promoting the idea that vaccines cause autism. Instead, the hearing became “1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism“. The hearing originally did not include autistic representation but, after a phone/fax/email campaign, that changed. Ari Ne’eman of the Autistic Self Advocacy Network and Michael John Carley of GRASP were invited to speak. The Committee then were presented with the false dichotomy of “Parents who believe in the vaccine epidemic” vs. “Autistics who don’t and want a focus on improving the lives of autistics”. Also a long session where Members of Congress berated government public health employees.

All in all a waste of my tax dollars, if you ask me.

The people who lobbied for the hearing apparently were not pleased with various aspects of the hearing.

The buzz has been building that another hearing is in the works. We were told that $40,000 had been donated the Political Action Committee (PAC) for the chair of the Oversight committee, Darryl Issa. The original source for that information (Patrick “Tim” Bolen) is far (far, far, far) from reliable. Also, there are limits on campaign donations and it seemed unlikely to me that $40k could be donated to his PAC. But, with the chatter rising on the hearing to the point that people are claiming it is scheduled for November, I thought I’d check.

The donations were reported to have been made from Jennifer Larson, who is with the tiny “Canary Party”. Tax documents indicate that Ms. Larson is a large financial backer of the Canary Party. Searching for what donations Ms. Larson has made (using OpenSecrets.org, the Center for Responsive Politics) I found a total of $40,000 donations to Congressman Issa, his PAC and the Republican National Committee though Ms. Larson and her company Vibrant Technologies (click to enlarge):

Larson-OpenSecrets

The bulk went to the Republican National Committee. I’d love to see what, if any, arrangements the RNC has to support Issa with those funds. If you think that the $10,200 given directly to ISSA and his PAC is not enough to get noticed, keep in mind that this is the 5th highest amount given to the Congressman this year (click to enlarge):

vibrant

Ms. Larson is quoted in a press release:

“We are thrilled that Rep. Darrell Issa will be holding a second round of vaccine hearings this fall in the Committee on Oversight and Government Reform, to examine just what is happening in the VICP,” said Canary Party President Jennifer Larson. “We are eager for Congress and the American people to see just how far the program has strayed from what it was intended to be when Congress put it in place in the 1980s. It has failed families and become nothing more than a tool to protect vaccine makers and cover government malfeasance in the vaccine program, to the detriment of countless children.”

Notice that the first hearing has been redefined. It wan’t about autism. I suspect in her view it never was. And that is sad. Last year’s hearing and the proposed hearing this year are about vaccines.

Last year’s hearing was preceded by donations from Gary Kompothecras (a Florida chiropractor) to Congressman Issa. Mr. Kompothecras was pictured at the hearing. If internet reports are to be believed, it appears that Mr. Kompothecras is part of the groups that split after the hearing last year. He has not donated this year to Congressman Issa or others on the committee. He and his wife did donate last year, about the time that it was reported that Congressman Issa agreed to hold the hearing.

If the buzz is correct, a hearing will be held soon. It won’t be about autism (and, thus, parents can be in the spotlight without sharing it with those inconvenient autistics). But, as we’ve seen, last year’s hearing wasn’t about autism either, right?

Did last year’s hearing have any impact on the lives of autistics? Can I say that my kid will have a better future because of that hearing? No. Absolutely not. Has congressman Issa joined the Congresional Autism Caucus? No. Has he sponsored or supported autism-relevant legislation? No. We have three bills, stalled in committee, one of which is a vaccine-study bill. None have his support.

And this year’s hearing will be even less relevant.
—
By Matt Carey

Whitewashing the brutal murder of Alex Spourdalakis

31 Aug

Alex Spourdalakis was a 14 year old autistic who was brutally murdered by his mother and another caregiver. Among those with extraordinary needs, Mr. Spourdalikis had extraordinary needs. Shortly before his spent a considerable amount of time in a hospital, reportedly restrained the whole time. So far the only real details from that time have come from his mother and caregiver who were the perpetrators of the murder. The family was offered help. When someone from the local Autism Society asked the mother what she needed “[Ms.] Spourdalakis said all she wanted was an attorney” and one was found for the family. Another news report states that “Department of Children and Family Services spokesperson says that Dorothy Spourdalakis was offered services, but she refused.” Mr. Spourdalakis’ case became well known, especially within the online autism communities. The family received the services of Andrew Wakefield, whose career has taken him into reality TV film making. Mr. Wakefield’s team helped to publicize the situation and followed the family to New York from Chicago as they sought help from Mr. Wakefield’s former colleague, the gastroenterologist Arthur Krigsman. It is not clear what treatment Krigsman prescribed. Sometime after this, the mother and caregiver began to conspire in a plan to murder Mr. Spourdalakis. When the carried out their plan, they poisoned Mr. Spourdalakis with sleeping pills. When this did not work quickly enough, the mother and caregiver stabbed him. Not once, not twice, but four times, including two stabs to the heart. When even this proved not fast enough, the mother and caregiver slit his wrist. Slit so deeply that reportedly his hand was nearly severed from his arm. When Mr. Spourdalakis finally passed, the mother and caregiver turned the knife on the family cat. After cleaning the knife, they returned it to it’s place in the kitchen. The mother and caregiver then took large doses of sleeping pills, the method they had just found to be ineffective in the murder of Mr. Spourdalakis. The father (who was divorced from the mother and living elsewhere) and an uncle tried to reach the mother that day and, finding that they could not reach her, came to the apartment. When the door was not answered, the uncle reportedly kicked it down. This action, in my view, indicates that the danger posed to the young Mr. Spourdalakis by his mother (who was reported to have started planning the murder a week in advance) was known to his extended family and they were monitoring the mother in an attempt to prevent harm.

As noted above, Andrew Wakefield inserted himself into the story. His joint venture with Polly Tommey, the Autism Media Channel, started collecting film of Mr. Spourdalakis and his mother during the hospital stay. Mr. Wakefield’s intent certainly wasn’t to document the final days of Mr. Spourdalakis. Most likely he was planning a vide similar to that for the trailer he prepared for his proposed reality Show “The Autism Team”. That video shows autistic children in meltdowns, being self-injurious. One specific child is flown from the U.K. to New York to see Arthur Krigsman (just as Mr. Spourdalakis was taken from Chicago to New York to see Krigsman). In the trailer, after visiting Krigsman the child was shown happy, playing, and the parents were shown grateful. As we know, this was not the conclusion of the Alex Spourdalakis story. Whatever Mr. Wakefield and Ms. Tommey had planned for the video they had taken, the “treat bowel disease and everyone is happy” story was not to be. Instead, he has produced a video of the “medical establishment fails family, leading to tragedy” theme. I do wonder how he managed to work that theme around the facts that the tragedy (aka brutal murder at the hands of his mother) came to pass after Mr. Spourdalakis was seen by Mr. Krigsman.

CBS News journalist Sharyl Attkisson picked up the story and aired some of the video Mr. Wakefield’s team collected in Film provides glimpse into life of autistic teen killed by his mother. What is the subject of her story? The victim? The murderers? No. It’s the film. Likely the title of the online article was not chosen by Ms. Attkisson. Whoever did chose it acted poorly.

The written piece starts out with, yes, the mother:

Chicago mom Dorothy Spourdalakis was ordered to be held without bond early this week, on the charge that she and her 14-year-old son’s caretaker, Jolanta Agata Skordzka, murdered her severely autistic son. Alex Spourdalakis was found dead in June in his bed in the River Grove, Ill., apartment he shared with his mother and Skrodzka.

When Ms. Attkisson presents the discovery of the crime scene, she again presents the murderers first, then the victim. The mother and caretaker were “barely alive themselves”. The key point–they were (and still are) alive.

When police found Alex dead at home in June, his mother and caretaker were barely alive themselves after allegedly overdosing him on medicine and stabbing him in the heart before attempting to commit suicide.

The story presents the “balance” of which group failed. Was it the medical establishment or was (as she presents in a brief clip at the end) society’s attitudes about disability and the disabled? She chose this approach rather than checking facts in depth. What options were open to the family? What is the father’s and uncle’s view, as they were apparently worried about the safety of the young Mr. Spourdalakis? What evidence is there that the diagnosis made by Krigsman is accurate. While Krigsman is well thought of in some circles, he is not without his critics nor his own history of possible ethics lapses. Did she search out what supports had been offered to the family? What they had asked for (an attorney, for example, which was provided).

The written article states, “But some in the autism advocacy community take issue with the idea that lack of help is an excuse for murder.”

Really? Only some? And is this somehow limited to the autism community? Ms. Attkisson, what is your position? Is a lack of support an excuse for murder?

But there it is, in black and white, the crux of the story: is lack of help an excuse for murder? The answer is clearly no, it is not an excuse. When did we get to the point that U.S. journalists can be discussing an “excuse” for murder?

What about the lack of help? We have to take Ms. Attkisson’s word that there was a lack of help. Because Ms. Attkisson, investigative journalist, didn’t investigate that question. Instead she presented Andrew Wakefield’s depiction of the story from the murderers. Mr. Wakefield’s word is, well, not good enough for me. People who murder their children and are trying to build a defense are not reliable sources in my opinion. But the word of the accused murderers was enough for Ms. Attkisson. She took the time to investigate the hospital where Mr. Spourdalakis was kept for 2 weeks, but she didn’t bother to look into what resources were available to the family. Was insurance coverage really denied? More importantly, if so, why?

And, yes, she takes Mr. Wakefield’s word for it. She introduces her video segment with the statement that this would be “another unexplained tragedy” if it weren’t for the video he collected.

The story notes:

Dorothy’s suicide note read, in part: Alex will no longer be “treated like an animal” or “subjected to restraints.”

He will no longer be treated like an animal. He met the same fate as the family cat. Even the cat deserved better.

As a human being, I am appalled by this story. I am appalled by the way Ms. Attkisson and CBS have given us a commercial for Andrew Wakefield’s company and failed miserably to do the basic investigative journalism needed.

Much more, as the parent of a child not so unlike Alex Spourdalakis, I am disgusted. A common phrase we hear from parents is “what will happen after I am gone?” What will happen in a world where “caregivers” are excused from murder of their charges? And I know I am not alone in my views, having discussed this with other parents of disabled children. I won’t presume to present the autistic perspective on this, but here is one account:CBS Provides Glimpse into “Documentary” Defending Autistic Teen Alex Spourdalakis’ Killers .

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by Matt Carey

Autism, Denmark and again no link with vaccines.

25 Aug

For a while now, I’ve been hoping that someone would publish data on the current state autism prevalence by birth year in Denmark. Denmark has been used for epidemiological studies for autism since their is a national database for health care. Thus, one can obtain a count of all people in Denmark who have been diagnosed with autism. Which is not the same thing as saying they have a count of all people in the country who are autistic. One can be autistic and not be diagnosed, as we will see.

A recent study using the Danish database is Recurrence of Autism Spectrum Disorders in Full- and Half-Siblings and Trends Over Time: A Population-Based Cohort Study. It’s an interesting study and I feel somewhat guilty for pulling the time-trend data out for my own discussion. In short, the study found that if a family has one child who is autistic, the chance for a subsequent child to be autistic is about 7 times higher than for families without an autistic child. This is fairly consistent with many other sibling studies over the years, but much lower than found in the recent baby siblings study out of the MIND Institute. That might be due to the active surveillance used by the team at MIND. I.e. they were actively monitoring and testing baby siblings.

Much more, they conclude:

Although the results from our comparison of recurrence in full- and half-siblings support the role of genetics in ASDs, the significant recurrence in maternal half-siblings may support the idea of a contributing role of factors associated with pregnancy and the maternal intrauterine environment. Finally, the lack of a time trend in the relative recurrence risk in our data suggests that the likely combination of genetic and environmental factors contributes to the risk for ASD recurrence in siblings or that the risk for recurrence because of such factors has not been affected by the rise in the ASD prevalence.

Very interesting–whatever is behind the higher prevalence among younger siblings, it seems to be the same today as 30 years ago.

What’s the overall prevalence of autism in Denmark according to this study? For childhood autism, they report 0.3%. For all ASD’s, 1.2%.

Autism, we are told by those promoting the autism/vaccine link, is unmistakable. Each autism prevalence report is not an estimate, but an accurate count of every autsitic because there is no way to miss an autistic. Back in the day, Rick Rollens was a constant fixture in the news on autism. He was a strong proponent of the idea that one could not miss autism:

WATSON:
Like many parents, Rick is convinced that Russell was damaged by a series of vaccinations. He strongly rejects the idea that the epidemic of autism can be entirely explained by poor diagnosis in the past because numbers have rose over the last few years.

ROLLENS:
Missing child with autism is like missing a train wreck. For us now to now think that somehow we have better identified a child who can’t talk, who has repetitive behaviour. Who makes no eye contact. Who is self- involved and in many cases self-abusive just defies logic.

Mr. Rollens was wrong on two counts (leaving aside his inflammatory and derogatory language). First, autism is not just the child who can not talk, self-involved and self-abusive. Second, yes, a lot of autistics have been missed. We’ve seen that time and time again. Look at the same population at different times and the later study will have found more autistics. An this goes for autistics with intellectual disability, as shown in the recent UCLA/Utah autism followup: “Today’s diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. ”

But, what about Denmark? A study from 10 years ago looked at autism incidence following the removal of thimerosal in Denmark in 1992. Thimerosal and the occurrence of autism: negative ecological evidence from Danish population-based data

In that study they found 956 children born in their study period who were diagnosed with autism by 2000:

A total of 956 children with a male to female ratio of 3.5:1 had been diagnosed with autism during the period 1971–2000.

The current Denmark study included individuals diagnosed until the end of 2010. I.e. there were 10 more years of followup. In those 10 years a lot more people were diagnosed. Where there were 956 diagnosed with autism by 2000 (for birth years 1971 to 2000), 2321 were diagnosed by 2010. That’s an increase of 240%. And the new study focused on birth years 1980 to 1999. I.e. the entire 1970’s birth cohort is not included in this count, and they still found over twice as many autistics. Where were they in 2000, when the previous study was performed? Living in Denmark, not identified as autistic.

There are a few factors which are likely behind this increase, but here we have a great example of “increased awareness” affecting autism prevalence.

And, those numbers were for childhood autism. For ASD, the increase is even larger. 10,377 Danes had an autism spectrum disorder diagnosis (for birth years 1980-1999) in the new study (the previous study included none). That’s a whopping 1080% increase. Again, there are a few reasons for this (including the increased awareness above), but here’s what “expanding the definition” does to autism.

Those increases would be an “epidemic” to some if it weren’t for the fact that those autistic Danes were there all along. They just weren’t diagnosed in 2000.

For many years, groups touting the idea that vaccines cause autism have pointed to Denmark as part of their argument. Denmark uses fewer vaccines than the U.S.. Generation Rescue used to have this on their website discussion of vaccines:

Comment: Denmark is a first world country based in Western Europe. Their schedule appears far more reasonable than ours. They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

What was that Danish vaccine schedule that Generation Rescue recommended?

DTaP at 3, 5 and 12 months
Hib at 3, 5 and 12 months
IPV at 3, 5 and 12 months, plus 5 years
MMR at 15 months and 12 years

No mercury (Denmark phased that out in 1992). No birth dose of Hepatitis B. Fewer vaccines overall than in the U.S.. And the same autism prevalence of about 1%.

If you dive into more details, it gets even worse for the vaccines and/or thimerosal cause autism argument. Let’s look at the prevalence as a function of birth year for childhood autism and ASD from the recent study:

AutismPrevalenceDenmark

Consider this statement from a previous study:

This means that children who followed the full vaccination program during the period 1961–1970 had received a total of 400 g of thimerosal or 200 g of ethyl mercury by the age of 15 months and during the period 1970–1992 they had received a total of 250 g of thimerosal or 125 g of ethyl mercury at 10 months of age. In March 1992 the last batch of thimerosalcontaining vaccine was released and distributed from Statens Serum Institut in Denmark.

The thimerosal exposure was higher prior to 1992 than after. But the prevalence of both childhood autism and ASD is higher after the removal of thimerosal. This is the same result as shown in the 2003 study. The number of vaccines seems to be constant over this time period, so number of vaccines/aluminum/too-many-too-soon or other arguments don’t work either.

How about taking just a single year. The prevalence for ASD in 1996-97 was 1.4%. What is the autism prevalence in the U.S. for that year? To answer accurately, I’d contend we need a count today, not an old one. But people promoting the idea that vaccines cause autism take the CDC reports as absolute measures of autism, comparing each report and telling us all about the epidemic. So, let’s take the CDC number for kids born in 1994: 0.8%. That study was reported in 2009.

So, we have 1.4% in Denmark and 0.8%, nearly half the Danish prevalence, in the U.S.. Denmark had no thimerosal, no Hepatitis B shot (birth or otherwise), fewer vaccines and less aluminum exposure. And much higher reported autism prevalence.

Oddly enough, even though there have been many prevalence studies out of Denmark, Tomljenovic and Shaw didn’t include Denmark in their study “Do aluminum vaccine adjuvants contribute to the rising prevalence of autism?” My guess is that Denmark didn’t fit their conclusion then, and, like Iceland, would make their analysis fall apart now. It is even more odd that Tomljenovic and Shaw didn’t use Denmark as Denmark was used in a faux-study put out by Generation Rescue. In AUTISM AND VACCINES AROUND THE WORLD: Vaccine Schedules, Autism Rates, and Under 5 Mortality Someone at Generation Rescue made the first attempt at the sleight of hand of comparing the autism prevalence in various countries vs their vaccine schedules. At that time, 2009, Generation Rescue claimed that the autism prevalence in Denmark was 1 in 2,200, misrepresenting the 2003 study discussed here. The raw prevalence in this 2008 study was 0.65% or about 1 in 153. That value didn’t fit the thesis that the Generation Rescue author wanted to convey.

One argument found on the internet is that the 2003 Denmark paper fudged the results by clipping the last years off the data presented. An email involving people involved in the study is quoted as saying, “But the incidence and prevalence are still decreasing in 2001“. Oh, my, we are told, the autism prevalence and incidence actually went down after the removal of thimerosal!

But, it didn’t. The prevalence of childhood autism (basically what was studied in the 2003 paper) in Denmark is flat from birth cohorts 1996-2004. Flat. The prevalence of ASD’s do see a decline. That must be it! Evidence that thimerosal was causing autism in Denmark! But it isn’t. The prevalence of ASD in 2003-04 is the same as that in 1990-91, before thimerosal was removed. Why does the ASD prevalence go down? We can’t say for sure, but my strong suspicion is that it’s the same reason why the authors in 2003 were seeing a decrease: too few years of follow up. Autistic kids are typically diagnosed earlier than those with other ASD’s, but the average age was about 5 in Denmark in 2003 (as I recall). ASD kids can have an average age of diagnosis of 8. Recall that the recently released study followed kids up to the end of 2010. It’s no surprise to me that the estimated prevalence for ASD kids born in 2002 is lower than that for kids born in 2000 in this study. And this is consistent with the flat prevalence for kids with childhood autism diagnoses, as they are typically diagnosed earlier and 8-9 years would be enough to find the majority of the autistics in that population.

What about the idea that there’s a “changepoint” in the autism prevalence in Denmark and California pointing to some event in the late 1980s that’s contributing to autism prevalence? For one thing, the present study notes that the recurrence risk doesn’t change with time, so that’s good evidence against such an idea. There is no changepoint in the California data in the 1980’s, as it is exponential and fitting it to two straight lines is just a mistake. What about the prevalence data just released? The data are not finely spaced in birth years, in my opinion, to give a good idea of any “changepoints” in the 1980’s. But there is a changepoint of sorts in the childhood autism data in the 1990’s. The data plateaus at about 1996. But, as already noted, this doesn’t coincide with anything related to vaccines. The ASD prevalence appears to peak at about 1994, but, again, this doesn’t coincide with vaccine events and, I suspect, results largely from lack of follow up for the kids in the later birth years.

How about the MMR vaccine? MMR uptake for young children (MMR1) was basically flat from 1987-1997. Uptake rose somewhat after that. So, during the period that the estimated prevalence was increasing, MMR uptake was basically flat. During the time that the estimated prevalence was either flat (childhood autism) or decreasing (ASD’s), the MMR uptake was increasing. So if we were to play the “correlation equals causation” game, MMR prevents autism. (two notes, preventing rubella infections most likely does prevent some autism and the link above shows a nice example of rubella infections going down after MMR was introduced in 1987. The two points are not linked because most women in Denmark who were infected with rubella before 18 weeks gestation chose abortion, resulting in a low congenital rubella syndrome prevalence).

How about the “fetal cells in vaccines cause autism” argument? It’s one without biological plausibility, but then so was the thimerosal idea. I’d be interested in seeing how the vaccines were produced in Denmark in the 1990’s, but at present, the MMR vaccine there is developed using chicken eggs, not fetal cell lines. And they don’t routinely vaccinate against chickenpox, another vaccine in the U.S. using fetal cell lines. It looks like at least as far back as 1999 they were using egg-based vaccine production for MMR.

So, it appears we have a country with no vaccines grown in fetal cell lines with an autism prevalence as high or higher than that in the U.S.. In other words, the “vaccines from fetal cell lines caused the ‘autism epidemic’ theory” also appears to be debunked by the Denmark data.

In case you are looking for correlations with the vaccine program, here’s the history in Denmark.

So, how about the rise in estimated prevalence in the 1980’s. Is it “real”, as in does it represent an actual increase in the fraction of autistics in the population? It’s a good question and one which could be answered by performing a real study of autism prevalence in adults. The sort of study I and others have called for in the U.S., but that most autism-parent advocacy groups have refused to support. Such a study would not only answer the question of the prevalence, but it would give us valuable data on what has led to success and failure among the autistic adult population.

For those promoting the idea that environmental mercury emissions are a factor in the increase of autism rates, if you have data for Denmark, I’d love to see it. In the U.S., environmental mercury emissions dropped by over 50% in the 1990’s.

Lastly, let’s discuss a comment statement one will read or hear. It goes something like “the autism prevalence was 1 in 10,000 in 1980 and it’s 1 in 1,000 today”. This involves a number of sleights of hand. First, the autism prevalence wasn’t 1 in 10,000 in 1980. It was a few in 10,000 (Wing and Gould reported about 5/10,000). Doesn’t sound like a big deal, but when people start taking ratios (it went up a gazillion percent) a factor of 2 or 3 in the denominator makes a difference. Second, this was the estimated prevalence based on the number of autistics diagnosed at the time. As shown above, the childhood autism prevalence estimate for Denmark in the 1980’s increased by 240% in the past decade. This was not a real increase, but better identification. Third, the comparison is between autism (childhood autism, DSM-III autism or some other restrictive definition) vs. autism spectrum disorders. Also shown above was that the prevalence of ASD’s in the 1980’s increased by a factor of 10, increasing only in the past 10 years.

A factor of 10 in the numerator, a factor of 3 or 4 in the denominator and pretty soon you are talking about a big part of the increases observed.

In the end, none of the above arguments are that new. Or, to put it better, none of the vaccines-cause-autism arguments had much real support. The mercury idea has lost much of the support it had 10 years ago in the parent community, but it persists. The aluminum in vaccines idea has risen to try to take the place of the mercury hypothesis, but it is based on the exact same smoke and mirrors. The idea that the increase in autism is due to the MMR has been scientifically dead for years. And, yet, these ideas persist. And they cause harm, both to the community at large and to the autism community.

—
Matt Carey

Jenny McCarthy, shilling for big tobacco

10 Aug

Not my usual style for an article title, I know, but I couldn’t think of any other way to say this.  Jenny McCarthy is now advertising for Blu e-cigarettes. Blu is owned by Lorillard, a major tobacco company.

“All the fun and none of the guilt of having a cigarette”, she says in one video. Yes, children, smoking is fun. And sexy.  Smoke an e-cigarette and you can get a date.

Fun and sexy.  Anyone else feel like we are watching an episode of Mad Men (a show about advertising in the 1960’s)?

image

After her stance on vaccines, Jenny McCarthy wouldn’t promote something that is toxic, right? Of course the health aspects have been tested, right?

Here’s a bit from the Blu FAQ.

Is blu better for me than traditional cigarettes?

blu liquid is made in the U.S. with domestic and imported ingredients by Johnson Creek Enterprises in Hartland Wisconsin; we maintain an organization that inspects product lines at all facilities daily. blu simulates the smoking experience without the tobacco smoke, ash and smell associated with traditional tobacco cigarettes. blu should not be used as a quit smoking device as it has not been approved by the FDA as a cessation device. blu eCigs are not a smoking cessation product and have not been evaluated by the Food and Drug Administration, nor are they intended to treat, prevent or cure any disease or condition.

Did you catch where they address the question of whether the health risks are reduced in e-cigarettes? That’s right, they didn’t. They didn’t point out that there are no safety studies.  You know, long term health outcomes of the sort that Jenny McCarthy says are lacking in vaccine research making such research in her view — yes — tobacco science.

What’s in the “smoke juice” used in Blu? I didn’t find it easily on their website, but here’s what the manufacturer of the liquid says

Johnson Creek Original Smoke Juice is happy to furnish our ingredient list! In fact, we list our ingredients right on the bottle. USP Grade Propylene Glycol (not in Red Oak Smoke Juice Recipe) USP Grade Vegetable Glycerin USP Grade Glycerol USP Grade Deionized water USP Grade Nicotine (except in Zero Nicotine recipe) Natural Flavors Artificial flavors USP Grade Citric Acid

“Propylene Glycol“. That’s a form of antifreeze. A form that has been approved by the FDA for some food uses. Ms. McCarthy and her team falsely claimed that vaccines contain “antifreeze”. It’s scary in vaccines but OK in an e-cigarette. Is propylene glycol scary? No. But there is heavy irony in her promoting a product using an antifreeze after using this term (falsely) as a scare tactic about vaccines.

Edit to add: The Blu website does include the ingredients and Propylene Glycol isn’t in them.

Ingredients: blu™ flavor cartridges are propylene glycol-free with six (6) key ingredients: distilled water, nicotine (when applicable), FCC grade vegetable glycerin, natural flavors, artificial flavors, and citric acid.

I’m so glad that they use high grade (USP Grade) nicotine. Only the best, right?

Here’s the proposition 65 warning on the Blu website;

| CALIFORNIA PROPOSITION 65 – Warning: This product contains nicotine, a chemical known to the state of California to cause birth defects or other reproductive harm.

I seem to recall Jenny McCarthy telling the story of how she locked herself in a hotel room so she could quit smoking when she learned she was pregnant. She believed that tobacco ingredients were harmful then. Now she’s selling a nicotine delivery system.

Jenny MCarthy is not new to promoting toxins. Back in her vaccine campaign heyday she touted the benefits of botox. In 2008 she only got a little bit (every two months). Now she’s “Team Botox“.

I will say, her move to promote e-cigarettes was unexpected. Which is different from saying I’m surprised. If someone had said, “do you think Jenny McCarthy would accept money to promote an e-cigarette nicotine delivery system”, I’d have said yes. Jenny McCarthy may not be consistent on her stories and beliefs, but she is consistent in promoting Jenny McCarthy and taking opportunities to make money.

—
By Matt Carey

Note–I posted an early draft of this article which contains errors. The original paragraph is below

“Propylene Glycol”. That would be the same substance used in vaccines that Ms. McCarthy and her team mislabelled “antifreeze”. It’s scary in vaccines but OK in an e-cigarette. Which do you think contains the greater exposure? (Hint, infants don’t carry packs of vaccines every day). Is propylene glycol scary? No. But there is heavy irony in her promoting a product using it after using this substance as a scare tactic about vaccines.

The Amish may not be a great population for a vaccinated/unvaccinated study

10 Aug

The recent attempt to legislate brought back the subject of the Amish, vaccination and autism. It’s an old idea, made popular by a journalist whose work was, shall we say, less than complete.

House Resolution 1757 (still stuck in committee) states:

” Target Populations- The Secretary shall seek to include in the study under this section populations in the United States that have traditionally remained unvaccinated for religious or other reasons, which populations may include Old Order Amish…”

Whenever the Amish are brought forward as a population for vaccinated/unvaccinated studies, people present many reasons why such an idea lacks rigor.

1) The Amish do vaccinate. They have no prohibition against vaccination. (i.e. the statement that “because the Amish have a religious exemption from vaccination” is incorrect).

2) “The” Amish is a bit of a misnomer. Amish is more of a plural, as in a group of basically island populations which have been developing somewhat independently genetically for a few hundred years.

3) Talking about studying the Amish as though one has the right to just force them to submit is very disrespectful. And a bad assumption. One does not tell a community that they have to be study subjects. One asks. The Amish may very well not want the entire population screened for autism.

There are more arguments. Valid arguments. But without some cold, hard, numbers the response that usually comes up is, “Ah, you are afraid of what we will find!”

No, if one is going to do a study, one should be rigorous. One should get as close to the correct answer as possible. Studying the Amish as an “unvaccinated” population with “no” (or little) autistic subpopulation is to start out with little chance for success.

But how about some cold, hard numbers (I mean, beside from the fact that the Amish vaccinate and there are autistic Amish).

Here’s a talk presented this summer by the DDC Clinic in Ohio. This clinic is following the model of the cleverly hidden “Clinic For Special Children” that a certain journalist failed to contact before publishing his conclusions. In the description of the Clinic you will find:

A 501(c) (3) non-profit organization located in
Middlefield of Ohio, Geauga Amish settlement
• Total population ~95,000, Amish ~14,000 (15%)
• 50% of developmental disabilities are from Amish
• One hour (but a world) away from world class healthcare

Yes, they are 15% of the local population but account for about 50% of the developmentally disabled population for their community.

In other words, the prevalence of developmental disability is more than five times that of the general population.

Do you still want to compare this population for long term health outcomes and vaccination status? Do you want to say, “hey, here’s a population that doesn’t vaccinate and they have more developmental disability than the rest of the population?”

That’s what people have been pointing out for years in stating that genetically the Amish are somewhat distinct from the rest of the U.S. population. The proposed study will run into big problems.

Why does the Clinic for Special Children (and similar clinics) exist? They aren’t just there because the Amish are likely to be underserved in general since they lack insurance (which, I’ve been told, is something the Amish avoid). The Clinic’s mission statement is:

The Clinic for Special Children was established in 1989 as a non-profit medical service for Amish and Mennonite children with genetic disorders. The Clinic serves children by translating advances in genetics into timely diagnoses and accessible, comprehensive medical care, and by developing better understanding of heritable diseases.

Again, they are a small, island-like population. Many genetic conditions are more common in their communities. Many are metabolic conditions. (Dr. Morton’s talk at the conference was “Approach to Care for Patients with Metabolic Disorders”). Conditions which put people at greater risk of harm from infections, hence the reason that people have been working to increase vaccine uptake in the Amish over the past 3 decades.

The Clinic for Special Children has been an example of how focusing on genetic conditions can have major impacts on the well being of those with the conditions. Over the past 30 years, the Clinic has pioneered efforts which have resulted in better health and longer lives for their patients. Too often we hear in the autism communities that genetic conditions mean “no hope”.

I’ll leave you with the words of Dr. Holmes Morton of the Clinic for Special Children. Words from the Clinic’s main page:

“Special children are not just interesting medical problems, subjects of grants and research. Nor should they be called burdens to their families and communities. They are children who need our help, and if we allow them to, they will teach us compassion. They are children who need our help, and if we allow them to, they will teach us love. If we come to know these children as we should, they will make us better scientists, better physicians, and thoughtful people.”

—
By Matt Carey

Could schools be doing more to identify autistic kids?

5 Aug

Autism is supposed to present before age 3. One might then think that most autistics would be diagnosed by age three, but this is not the case. The average age of diagnosis is above age three. Consider the recent National Survey of Children’s Health. This survey was the basis for the recent autism prevalence estimate of 1 in 50 in the U.S.. When were these kids diagnosed? The question was posed in the survey:

NCHS age distribution

Most kids were diagnosed after age 3. Many after age 5. A significant minority after age 10.

One would hope that parents, pediatricians, family members, day care workers, pre school staff and more would raise flags before kids enter school. But not all kids go to day care or preschool. One would hope that when kids get to kindergarten they might be referred for evaluations if they show signs of autism. One might think that a school nurse or a school psychologist would test a kid and inform parents of the possibility of autism. But that doesn’t seem to happen. Out of over 2000 autistic kids in the survey, only 130 were identified by a school psychologist:

NCHS which doc

Perhaps in some cases parents are being referred to an outside psychologist for diagnosis. But there isn’t strong evidence in the age distribution that a lot of kids are being diagnosed at ages 5 and 6, when they enter school. Don’t get me wrong, teachers and school staff do a lot. But they have a lot to do and autistic kids in regular and special education are not getting identified as early as could happen.

It can be done. Yvette Janvier demonstrated this in underserved communities, but the need is there in all communities.
“Study Finds Early Childhood Educators Can Effectively Screen Students For Autism In Underserved Communities

—
By Matt Carey

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