Autism blogs are not news!

By on August 12, 2011 in Autism

I’m finding more and more of a disturbing trend lately… where Autism blogs, by parents, are deeming themselves news media and submitting their work to Google News and other sources.

The media, especially aggregators such as Google News, make it especially easy these days for average people to be heard… not just heard, but to be included in with the other news stories.

Many news sources allow “reader opinions” or even let them write in as “editorial pieces”… which is good, to a point. However many people don’t differentiate these stories from actual, fact checked and verified news stories… not that actual journalists are a whole lot better these days, but you get the point.

fact or opinionWhen the news isn’t the news

There’s a code by which journalists go by, or at least should go by. That is that they reports facts as facts and opinions as opinions. That means that they need to get on the phone, go to the locations, talk to the people and verify that facts are facts.

The news agencies have a very real obligation to the public to bring current, accurate and fact checked information… obviously this doesn’t happen very well, especially with recent events in the media but in practice, this is how it’s supposed to be.

Blogs are a way for people to share their opinions, to add commentary to what they find in the news and to share information that they have acquired. Bloggers can do a fair amount of fact checking but for the most part, the fact checking involves what they read from the media, from other bloggers, from other websites that have random information and some people even use Youtube.

Two wrongs do not make a right

Many bloggers find that the media is slanted or even lie to tell their own versions of stories… so those bloggers write their blogs to combat what they find in the media, to argue their side of the story.

Eventually, they discover that they can submit their own stories as news sources as well, thinking that their own slant will help to balance the system but this couldn’t be more wrong.

First of all, two wrong opinions, event if opposites, have no guarantee of being right. Also, even if one is right and one is wrong, who should the reader believe? Because most people will believe one and not the other, rather than find middle ground or seek more information.

Worst of all, most people won’t even read information from both sides in the first place.

No room for a second opinion

People don’t read the news from various sources to get a second opinion. If they get their news from one source, they depend on that source…. and will rarely go to another source. Especially if it’s the same story.

Which means that they won’t fact check it themselves, they just believe what they read and take it as fact. You see it all the time when you talk to people that argue with you on current events… they’re so sure of something that you believe differently… it’s because you got your news from different sources.

If a person believes your blog posts to be their dependable news source, good for you…  bad for them. I feel bad for them because they now think your opinion is a fact. And whether you are right or wrong… no opinion is fact.

When the solution only adds to the problem

I see these blogs in the Google News lists and I cringe. Actually, I see red. It really upsets me.

These people, upset that the media is deceiving them, go out of their way to deceive people. What kind of messed up logic is that??

It’s even worse when I continue on to read them and it’s so blatantly obvious that it’s an opinion, and more so, a wrong opinion… that is so blatantly obviously slanted to their own views…. that’s what really upsets me.

Now, there’s nothing wrong with having a blog, there’s nothing wrong with even getting hundreds of thousands of readers… if people like your reading, like what you’re saying… great work! Good on you.

But your blog is not news!!!

I wish there was a way to “report” these sites or people such that they’d be de-listed because there’s just no way that they should be included with other news sources.

But as it stands, there is no way to do that. We have to filter ourselves and just hope we can recognize a blog post from a news source.

If our community isn’t messed up enough with the conflicting messages we send the public, do we really need to make it worse by doing this?!?

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Autism – Etiquette and Proper Behaviors

By on August 11, 2011 in Autism

Recently, I’ve been reading a few articles where Autistics would do or say things that society would generally consider wrong, or bad behavior, and other people would actually defend them, stating that it’s one of the challenges of Autism.

I have an issue with this.

etiquetteLearning Etiquette

The fact of the matter is that no one is born with good manners. All children have to be taught what is considered a good behavior and what isn’t… as well as etiquette. Saying please and thank you is a good start.

But more so than that, children learn how to eat with their mouth closed, to not slurp their drinks, to respect their elders and so on and so forth.

Autism Etiquette

Is there any reason that a person with Autism should not be taught etiquette or what is considered bad behavior? Of course not.

Temple Grandin often explains how her mother put a lot of emphasis on proper etiquette and how much that helped her later in life.

Children need to learn these things early with or without Autism as behaviors are difficult to change, especially if there is some lack of understanding as to the differences between various similar behaviors. That is to say, for an Autistic, one behavior could be considered acceptable, another not acceptable and yet be very similar in nature. This could confuse them.

So who doesn’t have good behaviors?

The fact is, there’s only two times that someone has bad behaviors…

  1. The child is not taught. The parents, for what ever reason, do not teach a child proper manners, etiquette and behaviors
  2. The child, or person later in life, makes a conscious choice to have bad behaviors

We’ve all said something wrong or done the wrong thing from time to time, but we usually learn from those mistakes. We usually adjust our behaviors along the way.

That applies to those with Autism as well. When you feel bad for what you’ve said, you don’t do it again.

It’s not ok to just be rude or to continue bad manners and use Autism as an excuse. It’s not an excuse. I may lead to some confusion but it’s not an excuse to live a life of bad manners.

Dear Parents

Teach your children good manners. Don’t presume that they won’t “get it”, don’t presume that they aren’t absorbing what you say and certainly don’t presume that it will just never apply to them because they have Autism.

If you want your child to “fit in” with society, you’re going to have to teach them what society will expect of them.

Some people will dismiss the bad behaviors your children exhibit later in life but no everyone will. You would be much better off instilling good manners in them early. It will serve them well in life.

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

By on August 9, 2011 in Autism Study of the Month

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

By on August 8, 2011 in Autism vs Vaccines

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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Conversations between a boy, his brain and his heart

By on August 7, 2011 in Autism

During dinner tonight, Cameron (my 6 yr old with Autism) began to explain that he did bad things yesterday because his brain told him too. His brain gave him the bad ideas and he had to listen to his brain and so that is why he did those things.

It was at this point that I decided to introduce Cameron to his heart.

Thought vs Feeling

Brain vs HeartI explained to Cameron that his brain will always want to do things… some things that are good, some things that are bad. That’s because the brain doesn’t know what is right or wrong. The brain just gives you thoughts and ideas.

I told him that there’s another voice inside him that makes him feel if something is right or wrong. It doesn’t make him want to do anything but it does tell him if what he’s doing is good or bad… right or wrong.

Cameron: “How do you listen to your heart?”

Me: “Well, it doesn’t really speak to you… it makes you feel.”

Cameron: “Feel what?”

Me: “If your brain tells you to go and play instead of eating your supper… your heart makes you feel good or bad about that. Your heart is what makes you feel if something is a good thing to do or a bad thing to do.”

Cameron “…”

Me: “Does your heart tell you it’s good or bad if you don’t eat supper?”

Cameron: “Bad.”

Me: “So even though your brain wants to go and play, your heart knows that you should stay and eat, right?”

Cameron: “I should stay and eat! I should listen to my heart!”

Decisions

Cameron: “So I have to make my heart tell my brain?”

Me: “No. Your brain tells you what it wants to do and your heart tells you if it’s a good thing or bad thing. Then it’s up to you to decide if you want to do it.”

Cameron: “I decide?”

Me: “Yes. Do you remember when mom would give you two shirts to choose from when you got dressed in the morning? She’d ask you ‘Do you want this shirt, or this shirt?’ and you got to pick which one you wanted?”

Cameron: “ya…”

Me: “Well, your brain will want to do things and your heart will make you feel good or bad about it… then you get to decide ‘Do I do it or do I not do it?’”

Cameron: “I get to decide?”

Me: “Yes. That’s why you should always listen to your heart.”

After dinner

I finished eating first but a short time later, Cameron left the kitchen table with a huge smile, went straight to his mom and said “Mom, guess what!? I finished all of my supper because I listened to my heart!”

He was so proud.

A little while later his little brother was getting into a little bit of trouble, so Cameron pulled him aside and said “Tyler, you have to listen to your heart! Then you won’t get in trouble!”

This isn’t the first time that he’s explained to us how his brain thinks up the bad things and he just has to do them. But until now, I really had no way to handle that sort of thing. A 5 year old with obvious language/understanding deficits can only be reasoned with so much.

But now…. he’s such a proud 6 year old. Still with deficits, yet wise beyond his years… and so very bright.

I have complete faith that, even though he’ll still get into trouble like any boy should…. he’ll never forget how important it is to listen to his heart.

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