Weekly Wrap: Sebelius is to Obamacare as Boyle is to Autism
Immune System in Alzheimer's and Autism: Domino Effect From Mercury?

Social Media, Autism Friend or Foe?

Friend_or_Foe _(TV_gameshow)_titlecardBy  Cathy Jameson

I saw a notice posted in a doctor’s office a few weeks ago.  It wasn’t for patients but for the medical staff.  The topic was social media and how medical professionals can tap into it.  Someone would be speaking about helpful tips to know and use while on the web.  Rules of etiquette would to be shared as well.  How I wish I could have been there in attendance to hear what was going to be said! 
A Tweet, Pin, FaceBook post, YouTube video or Instagram picture.  Depending on who you’re following, or what you’re viewing, social media can give you a boost and a smile.  It can also get you into hot water. 

Social media.  Friend or foe?  For the autism parent with a vaccine injured child, I think it can be both. 

Is it necessary?



Because of how bombarded we are with one-sided information on highway billboards. 

Like this:

  CJ 11 3 1

Because we’re presented with contradictory information. 

Like this: 

CJ 11 3 2

Because we’re given information that can cause serious damage. Like this:

CJ 11 3 3

Because those in power should be honest and share all the facts but don’t. 

Like this:
CJ 11 3 4

Because the push for vaccines without regard to safety is all just so ludicrous. 

Like this:
CJ 11 3 5

The images above make me cringe.  They are plastered so many communities nowadays.  Tdap vaccine info graces signs on the interstate.  Flu shot signs outnumber people in the corner drug store.  Vaccine clinic announcements make more news than when a child with autism goes missing.  And autism is simply just a diagnosis, not a debilitating disorder which, for many, limits speech, intellectual abilities and independence. 

These messages and the media’s priorities are backwards.  Unless we turn our devices off, stop going into stores, close our eyes, plug our ears and hole ourselves up in our homes, coming into contact with the misinformation we’re being fed is almost unavoidable.   We can do something about it though.

Making an effort to call attention to important issues that affect our children and families can be done.  Not having as big a voice or as large a venue as the pro-vaccination and the autism-is-not-caused-by-vaccines crowd can be intimidating, but it shouldn’t stop us.  From drawing attention to the legislative, educational and medical issues that aren’t getting enough coverage, to combatting other issues that are overly sensationalized or incorrectly reported, we have the means to raise our voices. 

Sharing what we know helps to counter what has been watered down in the regular news.  In fact, it really isn’t too hard to do that. 

Sometimes it can be as simple as adding additional information in a waiting room magazine. 

Like this:

CJ 11 3 6

It’s also as easy as turning ourselves into a walking billboard. 

Like this:
CJ 11 3 7

Because after we learn it, we aren’t afraid to wear the truth on our sleeves (or on the back of a t-shirt).  And snapping pictures of that and posting it online helps our message go viral.
With a little help from photo shop, I’ve figured out another way to spread some news and to provide missing facts.  For example, taking one of the photos above, adding some key words to it and reposting it here assures that the information that should have originally been shared does get shared.

Like this:
CJ 11 3 8

Finding the accurate information, creating the new picture and making it just right takes time and patience.  I don’t have a lot of time, and some days I’ve lost my patience seeing what the media offers us as fact.  But our words. Our thoughts. Our pictures.  They are worth more a thousand words.  These words of ours are worth more than any slick sheet, commercial or billboard and can speak louder than what any paid spokesman could possibly say.  And we don’t need to take a class on social media to get us started.  Many have been using it for good for quite some time already.
The best part for us?  We’re not wasting millions of dollars in advertisements with misleading information.  We’re not spending anything on supplies or postage.  We’re using experience, passion and dedication to fuel our efforts.  We may not have as large a target audience yet; but we most certainly have an audience.  Our audience is in those waiting rooms, behind the computer screen, lurking on the message boards and following our Tweets, Pins and FB posts. 

Both online and in real life.  That neighbor.  That teacher.  That grocery store clerk.  They are watching.  They are listening.  They are wondering.  They are asking.  They seek us out because of what we know and because of why we do what we do.  Social media is our friend.  It’s where we told our children’s stories and how many of us found each other.  Social media is on our side. Let’s help each other and continue to use it to get and keep our stories in the news.  Let’s work together for our children.  It is they who brought us together.  It is they who we must remain focused. 
Cathy Jameson is a Contributing Editor for Age of Autism.



The vaccine market executives can keep themselves as busy as they want with urging us all to get vaccinated, but it may also fall on deaf ears. I remember many years ago there was a giant billboard that urged all women to get mammograms--and I didn't comply out of laziness but I remember passing that billboard and thinking that ought to get a mammogram.

I'm not saying that mammograms don't save lives but they also have side effects that might take lives as well--over diagnosis, radiation, and so on.

All these medical interventions have consequences down the road: biopsies (create scar tissue), mammograms (radiation), and vaccines (autoimmune diseases and neurological disorders). More people are wary of jumping on the band wagon as a consequence. Obviously some get away with following the marketing execs but then there are those that don't....Then we kick ourselves for ever even looking at the billboard or the sign. Why did I let a billboard tell me what to do?

cia parker

I just called the headquarters of the Schnucks supermarket, 1-800-264-4400. I picked up a flyer at their store about their Fluzone flu vaccine: it says: "Fluzone vaccine is for people who are 6 months of age and older." The second bullet says: "Fluzone HIgh-Dose vaccine is a preservative-free vaccine that is a higher dose of Fluzone for people 65 years of age and older." On the back it says: "Pregnant women should get a preservative-free vaccine." It deliberately uses the word "preservative-free" in order not to draw people's attention to the fact that the preservative is thimerosal, 50% mercury, 25 mcg of mercury in every dose. They are actively promoting giving the mercury-containing flu vaccine to babies six months and older, and older children and adults. Not for seniors as they're well aware that it causes Alzheimer's, and would prefer to put as much distance as possible between the mercury and the symptoms. They know that most people think mercury has been taken out of all vaccines, and don't realize that the law just said from vaccines primarily intended for children, but that if children get a flu vaccine (over half of recipients are adults) that it's just fine to give all of them mercury. The man I just talked to said he'd pass my concern along to their pharmacy department, but I doubt they will change the wording on their vaccine promotion flyer.

Carolyn Flannery

One thing I have always been tempted to do:
Where it says FLU SHot I want to circle it so it is a circled FLUSH.

And then label: Flu Shots contain mercury. Mercury causes Alzheimers and Autism. Google it.


RE: "It reminded me of the grandmother in South Carolina who wears the T-shirt with the simple message: VACCINES CAUSE AUTISM."

Somehow there needs to be an organized movement with T-shirts, posters and even Billboards that state this fact: "Vaccines Cause Autism"

Heidi N

There's no doubt that there are paid individuals on the Internet to scare people away from doing anything alternative. You can always tell them because they never back up what they say with any fact examples. They just make a statement and expect it to be blindly followed since it's the same statements you typically here from mainstream. Their statements are angry and well, very lacking in intelligence. I especially get a kick out of the ones that state they are professionals, and therefore know. Huh, if the professionals knew, than we wouldn't be learning how successful alternative medicines/practices really can be.

Shell Tzorfas

There really is no such thing as a Thimerosal vaccine, it just has less thimerosal. Anyone who knows homeopathy knows that a small amount of a substance can have big effects.http://www.cdph.ca.gov/programs/immunize/Pages/CaliforniaThimerosalLaw.aspx
Shell of "Recovering Autism, ADHD, & Special Needs."


This article deserves a gazillion Like, Like, Likes.

Everyone affected by autism must speak out, in some way.

No more thinking that "they" will fix things, so I don't have to.

Jeannette Bishop

Thanks, Cathy! These are helpful tips and an important reminder to use this resource. I can't imagine what I would understand at this point about my daughter's health without the anybody-and-everybody-can-blog type environment of the internet, though it is a much less comfortable type of "understanding" than what the controlled media dishes up. I'm thankful to all those who've made so much effort to reach out to warn all of us.

@John Stone re "so easy to troll," I'm not very versed in troll-speak but from a little experience that suggests to me he finds you very difficult (I would think likely impossible) to troll.


I remember reading somewhere that the vaccine promoters feel frustrated that whenever they post their propaganda they are deluged with comments criticizing vaccines and stories of vaccine injury. This happens so much that they wonder whether their articles are more harmful or helpful to their cause, because their articles become a place for readers to learn about the problems with vaccines. So, keep up the good work! Whenever you can, take a few minutes to tell about your experiences and about the science you have read that supports your opinions, and link to good websites which provide further information and another point of view.

John Stone


Yes, they all know what they are doing - the authors and the trolls who try to clear up behind them. In fact, they reckon that so long as they have caused confusion they have succeeded. One of them boasted to me recently (an epidemiologist at Johns Hopkins) in a particularly sickly and patronising way that I was "so easy to troll". I said that I thought he was a nauseating person and he said he forgave me "like all good Christians". Indeed, he is a nauseating person.

We've got to the point where they are drunk with it, as with so many ideologies of the past. The basic message is "OK, we are lying but what can you do about it?"


Anne McElroy Dachel

Thank you, Cathy, for this excellent article.

It reminded me of the grandmother in South Carolina who wears the T-shirt with the simple message: VACCINES CAUSE AUTISM.

Powerful stuff!



Agree with all except I don't like the t-shirt's message - vaccines without thimerosol are dangerous too.

Thank you for taking the time to share your experience with the dark side. However, why in the world would you talk to someone who talks down to you like this:

"Kreb: Just when I thought you were beginning to get the hang of this recipe, you have forgotten yourself, and poured the bowlful of ingredients all over yourself again. Here, let’s get you cleaned up."

If the sky was clear blue, they would insist that it was black. It's a game. I will engage with anyone that I disagree with or who has a different perspective as long as the person is honest and isn't arguing just to argue. As the scripture goes (paraphrasing) 'Don't cast your pearls before swine'.


After such an exchange, there is a level of frustration and no outlet -- it is stressful for you -- I know it has been stressful for me in the past.

Hitting the air with our fist -- does not make that frustration, anger and hurt go away either. . I have often wondered if they have any idea what beast of hurt and anger resides in our hearts and brains?

This is by the way the same arguments from 35 years ago.

That is these kids that suddenly develop seizures and neurological problems do so about the same time that vaccations occur.

Never mind that you told me that he was runnning 105 and was passing out from the last two, or your older kid came down with some strange disase called Kawasakis -- there was just something genetic. .

You did say in the past that there was seizures that run in your family right?

NOOOOOO I did not -- nothing like this --- EVER

In which they wrote in the ped notes -- Mother has a porr memory.

John Stone

Well said Cathy.

I have often meditated on the phrase "very safe" often used by heath officials for vaccines. It is an interesting manipulation of language and hides fraudulent intent. If they said the shots were "safe" they would be lying. If they say they are "very safe" it sounds like it is even better than "safe" but actually is indicating that the definition of safety, if there is any at all is less than safe. If they said "relatively safe" it would begin to give the game away - "relative to what"? Also, there is a kind of "nudge" as if to say "We know there is a risk but you don't want to worry your pretty little heads about it". What they are not saying is the risk is yours (and your child's) not theirs (hoho!)



Guys, on an unrelated matter, I thought I would share the following:

Recently an article that I saw here at AoA caught my attention. The article pertained to the Danish MMR study and claimed that based on the figures of the study there was indeed a link between MMR and autism. It was added that this finding was 'craftily' concealed by a creative way of counting autism cases in the study.


Given that the Danish MMR Study is often presented by pro-vaxxers as such a ‘stellar’ piece of 'studies find no link' claim, I decided to solicit the other side for their take. I approached Orac and his minions at RI.

I conversed with Krebiozen and you can find our entire exchanges under the, ‘Antivaccination movement and its quest for legitimacy thwarted’ thread. Krebiozen explained that the calculations were off due to AoA’s John Gilmore calculating rates in the ‘standard way’. This standard process involves taking the total number of vax/unvax autism cases and dividing them by the number of subjects in each group to come up with the rates.

Kreb, explained that with the Danish study of 500,000 plus kids born through the period of Jan 1, 1991 to Dec 31 1998, calculating figures in this way will result in inaccuracy due to two factors. First, the sample of kids included a selection of kids at certain ages or cohorts (0-1 and 1-2 yrs) that did not reach the Danish MMR uptake age of 15 months. Their presence in the study unfairly biased things in that if we were to assume that autism develops by chance some of these kids would naturally go on to develop autism, and likely when they were vaccinated. Autism after MMR in those cases would have been sheerly coincidental and not causal.

Perhaps the following example will better illustrate the effect:
In this example we have 1000 kids in four different age cohorts. We are also assuming that autism will naturally occur at 1% rate, and the corresponding autism cases are given.

0-1 0 1000 0
1-2 600 400 10 (6/4)
2-3 900 100 10 (9/1)
3-4 900 100 10 (9/1)
4-5 900 100 10 (9/1)

In the first cohort (0-1), the kids are too young to be vaccinated, so the full thousand are counted as unvaxed. In the next cohort (1-2) some of the kids have reached the vaccination age of 15 mths, so we hypothetically assume 600 are vaxed and 400 are unvaxed. The other cohorts have all the kids’ reaching the vaccination age and it is assumed that they will be vaxed at a 90% rate.

The important thing to notice here is that if we total all the autism cases and divide the number of the total sample of vax/unvax kids, we will never get accurate overall rate. The kids in the younger cohorts that will eventually go on to be vaccinated at the 90% rate are skewing things in favour of a higher vax rate.

The obvious question then is how do we deal with this problem? Well, the most sensible solution would be to remove the two younger cohorts from the study.

The second factor that Kreb pointed out, which also follows on the same logic as the first, is that a ‘straight-forward’ calculation of overall rates among different ages of kids will always result in wrong figures due to autism and vaccination increasing with age. The younger kids that are vaccinated less, as they age will go on to get vaccinated, and at an older age autism is more likely to be detected in them. Autism then after MMR, again, would simply be coincidental and not causal. I must concede that I had a tough time with this concept – so much so that on several times Kreb questioned my mental capacity and whether I was truly and ‘idiot’. (They can be such nice people!) Perhaps another example will best demonstrate the effect:

We have two age cohorts. In the ‘2-3’ cohort some parents have not vaccinated their kids, yet, perhaps due to delay and neglect. Autism in this cohort, because the kids are so young, is going undetected at a high rate. We then assume a rate .5% -not 1%.

2-3 600 400 10 (3/2)
3-4 900 100 10 (9/1)

As the kids age we see how more of them are becoming vaccinated in the ‘3-4’ cohort. Autism detection is also increasing, so overall there are more cases. And calculating the rates we have (12/1500) .008 vaxed rate, and a (3/500) .006 unvaxed rate. We would expect the rates to be the same by chance, but they are not and the vaxed rate is higher!


In the preceding example, we see how even though the overall rates across age groups will be skewed towards a higher vax rate; the age-to-age rates do not suffer from this bias. This fact prompted me to consider whether the age-to-age rates using the standard, ‘straight-forward’ method of calculation was done. Kreb, however, did not seem at all eager to entertain this issue. And when I pressed him about the raw data of the study and the possibility of still doing such calculations, making sure to eliminate the sample of kids that were to young to be vaccinated, he told me that this data is no longer available on the Internet. I quote him…


Incidentally, I asked Dr. Madsen if his raw data are available on-line anywhere, but he told me he is no longer involved in that area and sad no longer has access to the data.
Even if I did put the data into a form that Gerg could understand, written in crayon in words of one syllable, I have no doubt at all he wouldn’t accept it. His mind is welded shut against anything that doesn’t fit with his crackpot beliefs.

So, this all brings us to the ‘million dollar question’, how did they calculate the rates in the study?

Well, the Danish MMR study is actually a retrospective study –(I did not initially think of it as such). Research came after-the-fact around 1999 and went back in the records of the kids born during the period of Jan 1, 1991 to Dec 31, 1998. They followed each child from birth, and using ‘life-years’ measurements, they tracked each child to Dec 31, 1999 to see if they developed autism. A ‘life-year’ is determined as 1 year of a person’s life.

I find it most helpful to think of the methodology in terms of as each child is born and they started the ‘autism-free life-years’ stopwatch. They stop the watch whenever the child developed autism. If the child did not, they ran it until the end follow-up date of Dec 31, 1999. Whatever ‘autism-free life-years’ time they obtained, they divided it between how long the child was vaccinated and not-vaccinated. They then compare the total autism-free life-years between the vax and unvax groups to see if there were a correlation.

In fairness, there are actually some sound benefits to this study design. Studying children’s individual records provides a certain degree of precision and accuracy that is not afforded by simply summing figures for a group. The counter-side of this benefit is that it’s not friendly to verification. If someone suspects that a figure may be incorrect, they may have to re-check all 500, 000 plus kids’ figures. Is it likely that they would have fudged the numbers in this way? Even though I would not put that pass them, I have trouble believing that they did. Fudging the numbers involves blatant dishonesty that runs the risk of being easily exposed should someone snitch down the road. They are usually craftier in their deceits.

The other benefit of the study is that it is quite informative. Not only is it able to determine if there is a correlation between MMR and autism --which it did not find-- but it also offers other findings. It’s able to determine if there was a clustering of cases around the time of MMR uptake, and thereby further implicating MMR. The study did not find this. It’ s also able to tell us if there was an age association between MMR uptake and autism. For instance, are younger kids given MMR more likely to develop autism? The study, again, did not find such a correlation.

In all, I would have been inclined to conclude that it was indeed a good study if, later, I did not stumble on a very serious irregularity. Reading the study, it explained that…


‘The mean age at diagnosis was four years and three months for autistic disorder and five years and three months for other autistic-spectrum disorders.’

Reviewing the chart below, we see the ages the children would have been at the end follow-up date – Dec 31, 1999.

Jan 91 – Dec 91 9yrs
Jan 92 – Dec 92 8yrs
Jan 93 – Dec 93 7yrs
Jan 94 – Dec 94 6yrs
Jan 95 – Dec 95 5yrs
Jan 96 – Dec 96 4yrs
Jan 97 – Dec 97 3yrs
Jan 98 -Dec 98 2yrs

So, clearly two of the age cohorts would not have even reached the median age of 4 for autism diagnosis. And, four cohorts would not have also reached the median age for diagnosis of other autistic-spectrum disorders –pass the age of 5. This represents a lot of cases that were potentially missed. Missed cases in any study are not friendly to determining trends or establishing correlations. This situation is extremely disadvantageous for our side.

I did bring this peculiarity up with Kreb and his reaction was the following:


Kreb: Just when I thought you were beginning to get the hang of this recipe, you have forgotten yourself, and poured the bowlful of ingredients all over yourself again. Here, let’s get you cleaned up.
Greg: Overall, just reflect on the amount of kids that are being missed in this study. Kerb, seriously, am I the only one that is having a problem with this? With all these missed cases, how is it possible to obtain a trend or correlation? Incredible!!
Kreb: They studied every single child born in Denmark, that’s 537,303 children, for 8 years, how many more children and for how much longer would you be satisfied with? They had to end the study at some point.

Clearly Kerb was implying that each of the cohorts was followed for eight years and this just was not the case; so I had to correct him:

You said:
“They studied every single child born in Denmark, that’s 537,303 children, for 8 years, how many more children and for how much longer would you be satisfied with? They had to end the study at some point. ”
They said:
“We designed a retrospective follow-up study of all children born in Denmark during the period from January 1, 1991, to December 31, 1998″
“Follow-up for the diagnosis of autistic disorder or another autistic-spectrum disorder began for all children on the day they reached one year of age and continued until the diagnosis of autism or an associated condition (the fragile X syndrome, Angelman’s syndrome, tuberous sclerosis, or congenital rubella), emigration, death, or the end of follow-up, on December 31, 1999, whichever occurred first”
Kerb, where am I to get from this that they studied all the kids for 8 years? If the kids were born in the cohort, say, Jan ’94 to Dec ’94 and followed to ‘the end of follow-up, on December 31, 1999′ that would’ve only been 6 years. According to the births, only 2 cohorts could have been studied for 8 yrs or more: Jan 91 – Dec 91 (9yrs) and Jan 92 – Dec 92 (8yrs).
In response to my protest I did get a ‘tacit’ admission from Kreb that I was correct, but he, nevertheless, went on the attack:
“You don’t seem to understand that if you follow a cohort of children for a fixed period of time, some of them will be younger at the end of the study. You have to have an end date for the study – it can’t go on forever. You can’t publish a study in 2002 that follows up children until 2013 as you suggested, and even if you did, the children born after 2010 would be too young, so you would have to extend the study another 2 years, but then the children born after 2012 would be too young so you would have to extend the study another 2 years… With your logic you would never end the study.”

Yet, in his spiel, what Kreb is doing is craftily changing the issue. It’s not a matter of whether the kids were studied for equal lengths, but whether all the cohorts were studied for a long enough time that autism could have been detected in them. Even if the researchers wanted to respect their Dec 31, 1999 end-date, nothing stopped them from going into the records even earlier and looking at the kids that were born in, say, the 80s. They could have still had the eight cohorts, but an earlier start would have ensured that the last cohorts had a longer time to be studied before the Dec 31, 1999 end-date.

In the end, I feel that the researchers knew precisely what they were doing by having such a short period between the last cohorts and the study’s end date. They were seeking to eliminate cases and they did succeed in doing so. I imagine the data was available and initially they did obtain the age-to-age figures using the ‘straight-forward’ method. I believe those figures were not favourable to their position. Perhaps the figure may not have necessarily indicated a correlation, but something to the extent of a movement towards a correlation as the children aged. Perhaps, the ‘autism-free life-years’ solution was simply the crafty means by which they concealed this inconvenient reality. What is clear to all though is that such a study that suffers from the serious flaw of missing cases is definitely not a sound one.

TannersDad Tim

Here here and Amen. 120,000 tweets for the cause reached this week. - TannersDad Tim #Autism asking why?

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.


Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)