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Autism Study of the Month: Ancestors that had mercury poisoning increases risk of Autism

Mercury

Ancestry of Pink Disease (Infantile Acrodynia) Identified as a Risk Factor for Autism Spectrum Disorders

Source - http://www.tandfonline.com/doi/abs/10.1080/15287394.2011.590097?journalCode=uteh20

Abstract

Pink disease (infantile acrodynia) was especially prevalent in the first half of the 20th century. Primarily attributed to exposure to mercury (Hg) commonly found in teething powders, the condition was developed by approximately 1 in 500 exposed children. The differential risk factor was identified as an idiosyncratic sensitivity to Hg. Autism spectrum disorders (ASD) have also been postulated to be produced by Hg. Analogous to the pink disease experience, Hg exposure is widespread yet only a fraction of exposed children develop an ASD, suggesting sensitivity to Hg may also be present in children with an ASD. The objective of this study was to test the hypothesis that individuals with a known hypersensitivity to Hg (pink disease survivors) may be more likely to have descendants with an ASD. Five hundred and twenty-two participants who had previously been diagnosed with pink disease completed a survey on the health outcomes of their descendants. The prevalence rates of ASD and a variety of other clinical conditions diagnosed in childhood (attention deficit hyperactivity disorder, epilepsy, Fragile X syndrome, and Down syndrome) were compared to well-established general population prevalence rates. The results showed the prevalence rate of ASD among the grandchildren of pink disease survivors (1 in 25) to be significantly higher than the comparable general population prevalence rate (1 in 160). The results support the hypothesis that Hg sensitivity may be a heritable/genetic risk factor for ASD.

PR Release from Source

You can read here: http://www.swinburne.edu.au/chancellery/mediacentre/media-centre/news/2011/08/australian-research-finds-autism-risk-

Translation

Essentially what they are saying is that they found 522 people that were diagnosed with “Pink Desease” or mercury poisoning a long time ago and then checked out their grandchildren.

What they found was that 1 in 25 of those children were on the Autism Spectrum… which is a mighty big leap from the 1 in 160 children currently estimated in Australia.

The idea is that those 522 people must have had a greater weakness to mercury to be poisoned by it when other children were not… which, genetically, could mean that their children and even grandchildren would also have a greater weakness to it.

Thus, being exposed to it in seafood, dental fillings or preservatives in some vaccines may trigger a response in those children, including Autism.

My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

1. Aside from mercury poisoning symptoms having nothing in common with Autism symptoms, one would have to wonder how many, if any, of those 522 grandparents are Autistic.

2. The study makes no mention of verifying any of the original 522 people’s claims of having mercury poisoning. Being so long ago, it’s entirely possible they were misdiagnosed or not diagnosed at all. There was also no mention of verifying the grandchild’s Autism diagnoses either.

3. The rates, while still higher, resemble the rates found in the Korea total population study. A comparison of a control group vs comparing numbers of children being diagnosed on a regular basis is likely to be radically different for multiple reasons, including parents not recognizing the signs in their children, inappropriate facilities/services and so on.

4. If true, this would indicate that Autism is still largely genetic and is triggered by a toxin, such as mercury. Meaning that Autism could simply be onset since birth or “awoken” by introduction of some outside toxin, such as mercury.

I’ve long held the belief that Autism is not a “one cause, one cure, one story” disorder… that the reason it eludes scientists so much is that there is no one answer.

Do I believe that this study is the answer to it all? No. But it could lead to further answers. It certainly has a better chance than some other recent stories, like this one.

I have my doubts about this one as a lot of wholes were left open in terms of verifying data, it’s collection methods and what the numbers really mean.

But that doesn’t mean that there isn’t some real validity to it’s findings.

As I find more information, more insights, I’ll continue to update this article.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

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The Jenny McCarthy-Autism paradox

Jenny McCarthy Autism

Perhaps I titled this article wrong… paradox should be plural.

If you’re an avid Jenny McCarthy fan and have some very strong beliefs in certain things, this may upset you but I still ask that you read with an open mind.

1998

Wakefield releases a study stating ties between the MMR vaccine and Autism… not stating exactly that one causes the other, or that you should stop taking vaccines… but that’s the message that the public receives. The media doesn’t help much nor does Wakefield in subsequent interviews.

1999

Thimerosal is removed from almost all vaccines in the US, except for some flu vaccines.

As a side note… Thimerosal was never in the MMR vaccine.

May 18th 2002

Jenny McCarthy’s son, Evan, is born.

2005

Evan, 2, begins having seizures so severe that he’s repeatedly rushed to hospital emergency. - http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Evan is diagnosed with Autism at the age of 2.

Remember, Evan was 2 in 2005 until May.

2006

Jenny writes about her “crystal child” in Insights of an Indigo Mom: A Mother’s Awakening… in which she writes about chain smoking and cheeseburgers up until his birth at which point she changed to Hepa air filters and eating vegetarian.

I wonder why she never blamed the chain smoking and cheeseburgers… also, one would wonder why she’d write about Cystal/Indigo stories if he was diagnosed with Autism 

2007

Jenny changes her story in May, saying that he’s not really a “crystal child”, he’s actually Autistic. - http://en.wikipedia.org/wiki/Jenny_McCarthy#Activism_and_autism_controversy

She claimed that the MMR vaccine specifically caused his Autism… and began campaigns against Thimerosal despite the fact that it never contained Thimerosal and he was born several years after Thimerosal was removed from most vaccines.

Jenny goes on a book writing spree over the next several years, publishing several books on motherhood as well as “healing Autism”.

2008

Jenny begins her crusade against Autism, becoming a spokesperson for Generation Rescue and TACA and appearing on several radio and television programs, including Oprah. Each appearance includes endorsements for her books.

Jenny also claims that Evan has “recovered”… which isn’t the same as cured. But it doesn’t stop the media from using that word a lot in articles about her and her son.

Jenny and Jim Carrey begin a “march on Washington” to “green our vaccines”. When interviewed, Jenny claims that Evan was “undiagnosed with Autism”.
Jenny also reinforces that she is not anti-vaccine but rather for safer vaccines and spaced out schedule. An excerpt:

Don’t do more than one shot in a visit. Do you see what I’m saying? Not to not vaccinate. Space them out, ask for mercury-free. Make sure your child is not sick before you vaccinate. Your child does not have a good immune system. How is it supposed to detox the vaccine? Test your child for an immune system. Make sure they have really good glutothion. Glutothion is your body’s naturally antioxidant to detox these things.

2010

Doctors and scientists start to question McCarthy and the diagnosis that her son received, claiming that his symptoms more closely resemble Landau-Kleffner syndrome… very similar to Autism but treatable. – source http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Despite the possibility that he never had Autism to begin with, Jenny confirms that she’ll continue to “be the voice” for the disorder. She also begins to realize that it wasn’t really the MMR vaccine after all, stating that she just wants vaccines to be safer, rather than getting rid of them entirely.

2011

Jenny joins the Generation Rescue board in January.

Jenny speaks out in support of Wakefield, claiming “I know children regress after vaccination because it happened to my own son” and asking “Why have only 2 of the 36 shots our kids receive been looked at for their relationship to autism?”

One would wonder why there’s any need to check the other vaccines if she’s so certain it’s the MMR.

Jenny continues onward, claiming that “kids do recover from Autism” as her son did, with a gf/cf diet and vitamins. Previous articles went into more details of his treatments including “a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. ”

What can we take from all of this?

Well, first, we have the fact that the blame she has shifts radically from Thimerosal (ethyl-mercury) to the MMR vaccine itself to the vaccine schedule (multiple vaccines at one time) to simply vaccines in general, asking for more research.

Secondly, she seems very conflicted about what exactly her child may actually have. First there’s crystal child/indigo mom theories, then it’s Autism and now there’s questions of Landau-Kleffner syndrome which, from what I can tell in my research, she has never actually explored.

Third, almost everything she gets involved with seems to have a heavy self promotional feel to it. Many praise her for getting into the spotlight for Autism awareness but at the same time, there are many people who believe she does it simply to get herself into the spotlight. Most notably when she recently offered to pose nude once again for Autism awareness reasons.

Finally, and this is a big one… she has become the leader of the anti-vaccine movement despite the fact that she never once said she is anti-vaccine herself…. and in fact, professed many times to wanting more research, safer schedules and “greener” vaccines.

Much like Wakefield, who had his own patent for a vaccine as partial replacement of the MMR vaccine (who would patent a vaccine if he was anti-vaccine?!?), her concerns over vaccine safety lead to hysteria and paranoia among parents who now place their children at much greater risk than they ever were before.

In my opinion

Seriously, as others have said before… stop listening to a Playboy bunny/actress for medical advice. That’s not to say that she’s not allowed to have an opinion. She is… but she’s doing the same research you are. She’s not a doctor nor a researcher.  She’s a mom just like every other mom and her opinion holds the same weight.

Also, stop putting words in her mouth that she didn’t even say. She never said she was anti-vaccine and she never told you to not vaccinate. Don’t tell me she did. Whether you hate me right now for writing all this or not, don’t assume I haven’t researched this. I have. I know she’s “pro-safety” and not “anti-vaccine.”

Lastly, and this is just my opinion… people of high influence, such as celebrities, should be very very careful about what they randomly put out there. These are our children and unless you are absolutely certain (and when it comes to vaccines, no matter what you think you know, you are NOT absolutely certain), you should not be putting fears and doubts and unproven concerns into the minds of people that could put themselves and their children at risk.

The point is, there is a chance that what you *think you know* may be wrong. There is an even bigger chance that the way people interpret what you say may be wrong.

The one clear message through this entire post, that I’d like for you to take from this is, Wakefield and McCarthy are not anti-vaccine!!!

Despite them both saying that they are for safer vaccines, they have not made it abundantly clear that they are not anti-vaccine.

Wakefield needs to stop putting out articles on studies, McCarthy needs to stop putting out articles on recovery and her own story.

What they need to do (if they insist on continuing) is write articles and do interviews that consist of nothing except them telling parents “Vaccinate your children! Do not withhold vaccinations. Vaccines save lives!” They need to explain their stance, clearly and definitively. If they are pro-safety and not anti-vaccine… then why are anti-vaccine activists praising their work?

If they have no intentions of making this clear, then they should no longer be in the media, in my opinion. Because the message they think they are sending is not the message that some parents are receiving.

This is the Jenny McCarthy paradox as I see it. On one hand, I respect her work to raise awareness. On the other hand, I despise the self promotion and her willingness to let parents continue to be anti-vaccine in her name.

Is it any wonder that people’s opinions of her are so conflicting?

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The truth about how a research study goes from the lab, through the media, to the people

I recently wrote about how the media is causing a civil war within the Autism community… it happens with many communities but obviously my focus is on Autism. It’s why you’re here reading my blog.

In response to that, Josie commented with a link to an image which is both hilarious and, more importantly, true.

It’s a very accurate description of exactly how a study can go from a researcher’s lab/desk, through the PR office to the media, through the national and local media, through the bloggers interpretations and finally, to the people.

And sadly, like a really messed up game of Telephone where the original message doesn’t even come close to resembling the final message… the study gets very distorted until what’s being told from person to person isn’t even remotely the same as what the original study concluded.

So the next time you read about a study in the news, or see something on television… remember this image because chances are, this is exactly what happened before it got to you.

science in the media

Source: http://phdcomics.com (Click for full size)

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How the media creates civil war within the autism community

media

The Media

Nothing much gets my blood boiling more than outright, obvious attempts to pit people against each other. I wrote about it before about how we do it to ourselves but the most obvious problem is the media.

We’re all well aware of the practice of sensationalizing a headline to entice the reader… to get at least one more pair of eyes on them rather than the competition.

But when I saw a headline tonight and clicked on it, I was appalled. Not just because the headline didn’t match the story….

What’s wrong with this story? Let me count the ways!

In the news tonight, I came across this story: Autism Risks: Genes May Not Play Biggest Role

Let’s begin:

  1. The title makes a rather bold statement which, other than the first paragraph, the story does not support. It states “it suggests factors other than genetics are at work” but in no way suggests that those “factors” would “play biggest role.”
  2. Dr. Joachim Hallmayer says “About half of what we see is due to environmental factors, and half of what we see is due to genetic factors” and then goes on further to say “being male is the most significant risk factor we know of.”  So the “biggest role” to which the title is alluding to is gender… which is… not… genetic?
  3. How old is this story anyway? Well, if you hit Google News to find it… you’ll find about 600 other reports on this… from July 5th!! That’s 25 days ago. Why is this story coming out so much later? Without even referencing the “twin study” in the title? Oh right… to get readers!

Now, all that said, the biggest issue I have is this…. Does the headline really tell the story? As I said in #3… there are over 600 news reports on this according to Google News, more if you use other search terms. I only skimmed the first page of results but here are some of the headlines…

Keep in mind that all of these headlines are for the SAME STUDY

  • Autism Risks: Genes May Not Play Biggest Role
  • Twin Study Points to Upbringing, Not Genetics, As Cause of Autism
  • Autism may be environmental, but it can also run in the family
  • Study: Environment plays larger role in autism
  • Autism triggered by environmental conditions, not just genes, says studies
  • Call for answers as research puts environment in the autism mix
  • Study: Environmental Factors May Be Just as Important as Genes in Autism
  • Study: Nurture, not nature, prominent in development of autism in twins
  • Reasons for autism in twins

Can you see just how wide of a net the media throws over this? In some cases, it’s all environmental, in other cases it’s “in the mix” to other articles that suggest it’s upbringing and nurturing that is “the problem.”

By the way, I love that last one. It’s from the “Times of India”… which I have rather enjoyed reading… here’s an example why: this is from their first paragraph:

A new study has found that apart from genetics, pregnancy and birth environment may also affect development of autism in twins.

Brilliant, non biased, no assumptions, no telling the reader what to think. Love it.

Does this happen often?

Unfortunately, this happens far too often with news stories as it is but within the Autism community, it’s almost like it’s par for the course.

It happens with just about every study that is released… which from what I can tell is about 1 per month. Some of the more prominent studies of recent years for the Autism community include divorce rates and diets.

Remember the study that suggested that there was “a higher rate of divorce” (pdf) for parents of autistic children? Then last year, a new study was released that said “80 Percent Autism-Divorce Rate Debunked in First-Of-Its Kind Scientific Study“… it was simply untrue. Or was it? Which do we believe?

The gluten free diet was in the news for a little while where scientists said “A Gluten-Free, Casein-Free Diet No Remedy for Autism.” The Mayo Clinic even went so far as to advise against it unless you’ve made especially certain with your doctor and/or dietitian. Meanwhile other articles such as this one clearly gives you references from PubMed which show that the GF/CF diet actually does clearly reduce some symptoms of Autism.

Where does this leave us?

Unfortunately, this leaves us to fend for ourselves but we’re not doing so well. We read news story headlines such as the one released today… 25 days later… and that title leads us into the story with either a preconceived notion of what to believe… and we believe it… or a complete contempt for the media and the people who would blindly believe it.

By the way, I don’t just mean the people who blindly believe this one particular news story I’m referencing today. I mean…. the people who believe any, or specificly certain articles out of the 600+ that were written about this one study. People will blindly believe which ever study has the most sensational, most hard hitting and more “says what I want to hear” headline they read no matter what the story says, no matter what the doctor is quoted as saying and no matter what anyone else tells them about the study.

And we fight… among ourselves… and I hate it. I hate the media. I hate what they put us through. I hate what they do to us.

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Dear researchers: please stop

I used to argue that all research was good research, that information is simply good to have no matter what it is. But at this point, I have to revisit that position and question it.

If your research concludes with….

Listen, I won’t argue that you’re more than qualified, you get paid very well and I respect what it is you do and what you’re trying to do… I understand you have the best of intentions, but here’s the thing:

If your research involves the phrase “may increase the risk of Autism” or anything similar… I ask that you please just don’t even tell anyone. Keep it to yourself.

In fact, if you know, going in, that your findings won’t result in 100% of all cases… don’t even bother doing the research. You know full well that a study on how close parents are to a highway when they have a child will not result in 100% of all close proximity cases having Autism so just don’t even bother doing it.

What the results mean to us

statisticsIn the beginning, these studies were very intriguing and really got people thinking. People wanted answers, we were starting to get answers. But what are the answers, really?

“May increase the risk” simply means that instead of 0.1% to 99.9%… now it’s 0.2% to 99.9%.

As far as we know, there’s always a risk of your child having Autism. So it’s not 0%. And we don’t know what causes it so we can’t do anything in particular to ensure it happens (not that anyone would want to).

So ultimately, all you’re really telling us is that doing something to increase the risk actually has very little bearing on whether or not our child with have Autism at all. Because for every study that says the risks go up, I can show you dozens… hundreds of parents that contradict that study and yet their child still has Autism. Or even better, parents that fit the study to a T and yet their child does not have Autism.

Will we ever move on beyond the Refrigerator Mom theory?

Granted, no one thinks Autism is caused by an uncaring mother anymore but it would seem that we certainly haven’t moved on from blaming the mother.

Recent articles include taking antidepressants, not taking prenatal vitamins, environment they live in (twin study) and older studies along the same lines include jaundice, c-section and other birth stresses, living near a freeway… and the list goes on and on and on…. and on.

If you read those articles and others, another catch phrase they use often is “new insight into autism” and yet.. a month later, a new study is released with that same catch phrase and the old one is all but forgotten.

What all of these catch phrases and conclusions really tell us is “it’s the parents fault, they did something that caused it, let’s find out what it MIGHT HAVE BEEN”.

What we’d like to hear

First of all, no one is opposed to finding out that some environmental factor or other possibility is the reason for our children having Autism. We just don’t want to know what it MIGHT BE. We just don’t want to hear about an increased risk anymore unless you are absolutely certain.

Tell us what caused an increase in 100% of the children. Heck, we’d even be ok with 75% or more… because then we’d know what to avoid for sure.

But “an increased risk” really only tells us that you blame us, will keep finding ways to blame us even though you’re not entirely sure why or how.

It’s now out of hand

These studies were intriguing at first, but now they’re just out of hand. It seems we get a new study per month that says they found something that increases the risk of Autism.

But new parents don’t read the ones before right now. They only read these stories as they become pertinent to their world… which is right now, when they’re about to become parents for the first time.

If they had the back story, if they had read the dozens of studies leading up to the one that will be released next month, perhaps they’d know just how out of hand it has all become. But they won’t read those previous stories… they’ll read the next one and believe it. And they’ll be scared.

They’ll take their prenatal vitamins, they’ll sell their house and move away from the freeway, they’ll avoid vaccines, they’ll risk their baby’s life avoiding a c-section and they’ll do it all out of complete and total fear from what they read in a recent study and for what?

The sad thing is, they could do all that and still end up with a child that has Autism. And then what? Do they wonder what they did wrong? Do they blame themselves since that’s what the studies have taught them to do? Or do they accept that despite all the risks they avoided… it was just meant to be.

Your studies mean very little to me any more. I find them to be a waste of money, a burden on the system, a way of blaming parents further, a media circus and a panic storm for new parents.

Crunch your numbers if you have to, talk to other people that did the same thing, compare those numbers, find others that did the same… and so on. Keep doing it until you have some actual answers for us. Until then, stop running to the media every time you have a chance to get your name in the paper.

 

Other similar stories:
Autism shouldn’t be about playing the blame game
“Wombs of Doom” or “How I Stopped Worrying and Learned to Love Poisoning My Children with SSRIs”
“May increase the risk of autism” studies versus real scientific research

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