Friday, June 6, 2008

On the Green Our Vaccines Rally

This topic is being more than adequately covered elsewhere, so I fortunately need not go into excessive detail about the Green Our Vaccines rally staged in Washington, D.C. on Wednesday.

I do, however, need to express one level of serious dismay with some of the posters being shown there. Some of the posters were fairly mild-mannered. Some ramped up the rhetoric, using Devil imagery to mock our government health agencies and employing the skull-and-crossbones to imply poison (although vaccines are not in any way poisonous). But the ones the evoked the most visceral response in me were the ones that exploited autistic children. Let me give you an example:

This post has been edited to remove two photos taken at the rally. For a discussion of why the photos were removed, please see the comments section.
The first photo depicted a mother holding a picture of her beautiful son, surrounded by a Skull and Crossbones and the words, "Stop Poisoning our future"


In this poster, Mommy's message to her son is quite clear - your future has been poisoned, you are a casualty. Where else but this rally can you find parents carrying photos of their *live* children accompanied by POISON and TOXIC WASTE symbolism and terminology? I have to wonder if the parents have stopped for a moment to consider the impact of this imagery on their child.
Now take a look at this one:

The second photo had two side-by-side frames. In the first was a smiling little boy with the heading "What God Made". In the second was the same boy in an awkward pose saying "What Man Made".

This is the one that elicited the most powerful response from me, but very likely not for the reason this Dad intended. First off, do you think Dad picked the best 'after' photo to prove his point, or the 'worst'? Am I the only one who gathers the intended message that if he were autistic in the 'before' picture, he couldn't possibly be smiling?
I am deeply bothered by the callous, insensitive nature of this poster. How is a child supposed to feel valued when their own father is going out of his way to cast his appearance/behavior in the worst possible light? This is really foul, really disturbing, and I think provides a chilling example of what happens when anti-vaccination zeal is a more powerful force in someone's life than simple respect for a person, a child.

I recently received a request from a friend to help them with some written assets for a project about how people view "behaviors". The simple request was to review some of my writing about my son and to pick out some examples where I had addressed problem behaviors. The goal of the project is to discuss various ways people refer to autistic behaviors in an effort to highlight some positive, respectful methods of doing so. So I went to work reviewing archived blogposts to find some. I knew I would have to do some digging, since I didn't specifically recall writing directly on this issue. The end result is that I found virtually nothing of benefit except some comments to my posts (not by me). The reason for this, as I discussed with my friend, is that I do not write negative things about my son. I can be frank and sometimes allude to difficult moments or times, but I feel a powerful parental duty to not cast aspersion on my son, the fact that he is autistic, the fact that raising him includes challenges that are directly related to his autism. My duty as a Dad to a 6-year old boy is to keep the world at bay, not to invite it in and hold him forth as a political tool or pawn in an anger and blame game.
Many contributors to the Autism Hub are accused of glossing over autism, of making light, of minimizing autism's disabling aspects, even of ignoring the existence of those who are most severely affected by autism. Perhaps the examples above can provide a good example of why I choose not to dwell on my son's most challenging issues for all the world to read and discuss. Perhaps I have too much respect for him as a person - a person who will someday read this blog and hopefully be proud of his Mom and his Dad and his brothers and who can feel really safe and secure knowing that he is valued as a person - not relegated to the scrapheap of collateral damage.

This philosophy is not new, not something I conveniently stumbled upon as a way to criticize the Green Our Vaccines attendees. My very first post to this blog, Taking Up The Pen, contains this line:
"It occurs to me that, years from now, these words will be accessible to all three of my sons."
But that's just One Dad's Opinion. What's yours?


52 comments:

Ivar T said...

I could barely sleep this night as I was angry for the same reason.

"Look at what the vaccines did to my son"

Is it such a disappointment when people turns out be like me?

Angela said...

I am so glad you addressed this... I actually wanted to go to the rally and ended up not going because they changed locations, however, I am so glad I didn't now.

It amazes me the amount of people who see this as a curse rather than the blessings that they are. I couldn't imagine Autism not being a daily part of our lives now or how that would decrease the fun we have with our son. It's all perspective I guess.

Club 166 said...

Last night I was watching the Greta van Susteren interview with Jenny McCarthy, and they showed a lot of those images from the rally.

They really were quite disturbing.

Joe

Navi said...

wow, then I guess my kid must not be autistic, according to them:
http://flickr.com/photos/navidoll/2555064348/

because as far as I can tell, that's a smile, and him looking right into the camera, because he loves his mommy taking photos of him (this was taken after I'd already snapped a few)

Foresam said...

"At the same time, John Best is a singularly despicable person with no rival for being the worst member of the autism community. So he shouldn't be lumped in with anyone, for better or for worse."

Steve, I saw this on AS and I just had to write and thank you for the compliment. Here's to hoping you can grow more brain cells.

Steve D said...

John, this is nothing I haven't said before. Are you surprised? All one has to do is spend 5 minutes at your blog to know the type of person you are.
For shame, John. Shame.

Ed said...

This before and after photo is really wrong.

I think of before and after photos as being used to advertise for products and the after photo is always shown as the best. Who would want a photo of them being shown in the present as worse than they used to be as the result of anything?

This encourages pity rather than a achievement and says, "Try not to appear too competant or achive too much or you will lose support." The supports won't change for the better as long pity is the way that is used to get them.

Daisy said...

Thanks for addressing this. The rally really bothered me for many reasons -- one being that my news-junkie son, a teen with Asperger's, was hearing people talk about his condition in a very inaccurate manner. I talked it over with him and reassured him that 1. He is a wonderful kid, and 2. Vaccines didn't cause his blindness or his Asperger's.

Foresam said...

Steve,
LOL, I give you a gold star for sticking with character assassination when it is the only defense you have for an invalid argument. I hear more thought provoking arguments from my 7 year old.

Steve D said...

That's a classic comment coming from the most notorious character assassin online, John.

Anonymous said...

I can get before and after pictures with my son smiling in both. Which still photo shows him beating himself in the head with his fist. I will leave that up to you

Foresam said...

Steve,
Pointing out the truth, which is what I do, is a lot different than character assassination. Exposing people as frauds who claim to be autistic is something the police should be interested in, as well as the social security office who pays them benefits they don't deserve.

Ed said...

Anonymous said...
"I can get before and after pictures with my son smiling in both. Which still photo shows him beating himself in the head with his fist. I will leave that up to you."

In the debate over causation and cure, vaccines are an important issue. My point wasn't about either.

Severity of symptoms, or what they are the result of is also not what I'm concerned with in my commenting here.

Though I'm not a child psychologist, I will make a random guess that being shown as being damaged by anything as a means for trying to advocate or even explian your point about something might interfere with the promotion a child's self esteem.

Anonymous said...

A child's self esteem is self-determined. If a child perceives they are different by any means blatant or inferred, it is up to that child to assign a positive or negative aspect to that difference.

Steve D said...

Anon 12:40
You said:
"A child's self esteem is self-determined. If a child perceives they are different by any means blatant or inferred, it is up to that child to assign a positive or negative aspect to that difference."

Ummm, no. Every child needs a caring, nurturing environment that is conducive to building self-esteem.
This is what parents are for. And good teachers, best friends, extended family, etc. We are very much a product of our environment.

Anonymous said...

Ummm, no. There are children of pathetic looser for parents, friends, and teachers that still have a very positive self-esteem because they know what not to think and do with their lives.

We are products of genetics, environment, and self-determination.

Anonymous said...

vaccines are in no way toxic-you people have gone and completely lost your minds. vaccines have done wonderful things for society dont get me wrong, but adverse reactions are way under reported (which even the fda will admit) and the safety of vaccines is grossly overestimated. i do have a child with autism who started showing signs after an adverse reaction to vaccines-will i say that im 100 percent sure the vaccine caused it -no. am i going to inject more known neurotoxins into her-no

Ginger Taylor, M.S. said...

Hello Dad,

You have posted my photographs on your site with out asking my permission.

I am sure you were not thinking about the intellectual property rights issue at the time, so it is probably an over site.

Could you please remove them?

Feel free to link to the page that I have posted them on, so they can be viewed in context as I had intended them for publication.

Thanks!

Steve D said...

Hi Ginger -
I'd like to to propose an alternative solution.
Instead of me simply taking the photos down, I am asking your permission to leave the photos up, but with an edit to the post - to appear before the first of the two photos - that states the following:

"These pictures are shown with permission from Ginger Taylor. If you wish to view the photos in their original context, please visit Adventures in Autism."
(with a direct link)

The Green Our Vaccines rally was a fairly controversial event, and I would guess that you would choose to promote, not limit, open discussion of all sides of the issue. Granting permission to use these photos would certainly demonstrate that willingness.

If you would still like the photos removed after considering my proposed modification to the blog entry, I will do so promptly.

Steve

AutismNewsBeat said...

Dad: I was also at the rally, and I would be glad to share some of the photos I took of anti-vaccine signs, t-shirts, etc. I also posted about 15 mins of video on YouTube of anti-vaccine activists in various stages of hysteria.

Anonymous said...

Wow, I think you have no idea how much these people love their children. You don't know how hard it is to go to a rally and know that you are not the "popular" point of view in the mass civilization. These people (and myself included) went because we love our children more than anything in the world and we want them cured. My son may have autism but he is not autism. If he had leukemia no one would question wanting to treat the disease, but because it is autism well then we are considered freaks that don't love our kids. Open your eyes and realize we are the ones that will change the future for our kids. Not sitting back saying we will rest on our behinds and hug and smile and sing Kumbaya. Our kids will be everything they can be because we will fight this problem until there is nothing left to fight.

Ginger Taylor, M.S. said...

Steve,

While we might disagree on things, I do appreciate open discussion of the issues surrounding the rally.

And were the subject matter not quite so personal I probably would not have a problem with you posting them.

But I still would like you to take the photos down.

Despite what some may want to attribute to those who marched, there was a lot of vulnerability shown by those that came. There were a lot of shared grief (and anger) and a lot of tears shed over what had been done to their kids.

Our kids.

They were very kind to let me take their pictures and I don't want to abuse that 'trust' by giving permission for them to be used in a forum that either shows contempt for them or even takes what they and their children have gone through too lightly.

I understand that you see them as exploitive. (Which I don't really understand because they were not using their kids pictures for any personal gain. I wore my own son's picture, but if they change the vaccine schedule or composition of vaccines, my life is no way changed.) I was there, and saw was people who came a long way at great financial expense to share their very personal and difficult stories so more kids would not fall ill unnecessarily.

(As an aside, the children in the photographs you have posted were not with their parents at the rally, and may have felt more free to be more frank in their messages).

And it sounds like you have another source, so it may not be a problem for you.

Thanks for responding so well. I appreciate it.

SusanE said...

The young woman in this photo is my daughter; the toddler is my grandson. My first reaction when reading your post was fury but after hours have passed & I am calmer; I can only express pity for your ignorance. Your first erroneous statement was "vaccines are not in any way poisonous". You obviously subscribe to the "one size fits all theory". We are all unique individuals and it is a fact that vaccines contain ingredients I would not feed my dog. They can and, in fact, have tipped the fragile balance in autistic children.

I can also assure you that when and if my grandson reads your pompous rhetoric he will respect his mother for the warrior she is. I guarantee you he will never see himself as a victim or a "casualty." She has devoted her life to her son's recovery and has attended seminars & rallies to increase awareness and force those in the government that mandate this vaccine timeframe,insurance industries & medical establishment to be held accountable. Do you honestly believe everything you are told? Without question, without doubt??

You obviously did not attend this rally. You have however taken to task the parents that felt passionate enough to attend. Your attempts to impose a guilt trip on them by using that worn out line "what will the children think" is lame. You feel that is your job as a father to a 6 yr. old autistic son to keep the world at bay. That and the other's that will use God as a scapegoat is also very disturbing to me. Yes, these children are God's gift but in His wisdom he also bestowed free will. My grandson will go forth into this world with a fighting chance thanks to his mother.

Steve D said...

Hi Ginger.
As promised, the photos have been removed. In their place I have left a written description of what they depicted.

A few other comments:

"Despite what some may want to attribute to those who marched, there was a lot of vulnerability shown by those that came. There were a lot of shared grief (and anger) and a lot of tears shed over what had been done to their kids."
This is a primary point of divergence in our world views, Ginger. I don't believe anyone did anything to my son. Nor do I expend tremendous energy and resources in, to use your words, grief and anger over the fact that he is autistic.

"(As an aside, the children in the photographs you have posted were not with their parents at the rally, and may have felt more free to be more frank in their messages)."
I am a bit surprised you would make this point, seeing the number of autistic children and young adults that were at the rally. What is the impact of these parents' signs on other peoples' kids?

"And it sounds like you have another source, so it may not be a problem for you."
I very much appreciate AutismNewsBeat's offer, but I think I will leave the text in place and refer readers to this discussion in the comments section.

"Thanks for responding so well. I appreciate it."
There is room for civility in this discourse. I wish the sign makers had been so inclined.

Steve D said...

Hi Susan -
"The young woman in this photo is my daughter; the toddler is my grandson."
They are beautiful, and I'm happy that you have them in your life. Hundreds of thousands of kids in the world are, unfortunately, killed each and every year by vaccine-preventable diseases, leaving many grieving grandmothers.

"My first reaction when reading your post was fury but after hours have passed & I am calmer; I can only express pity for your ignorance."
I would ask that you reserve your pity for someone deserving of it. Also, you are welcome to discuss issues on this blog, and I have no compunction about allowing opposing viewpoints. However, if you insist on citing my "ignorance", I will have to become a less hospitable blog owner. I'm sure you can understand.

"Your first erroneous statement was "vaccines are not in any way poisonous"."
Please feel free to present any evidence that would convince me otherwise. Your simply stating that it is so is not doing the trick.

"You obviously subscribe to the "one size fits all theory". We are all unique individuals and it is a fact that vaccines contain ingredients I would not feed my dog. They can and, in fact, have tipped the fragile balance in autistic children."
I understand that you believe this to be so. This belief in no way excuses someone from touting their own child as a toxic train wreck.

"I can also assure you that when and if my grandson reads your pompous rhetoric he will respect his mother for the warrior she is. I guarantee you he will never see himself as a victim or a "casualty.""
I hope that you are right, Susan. I don't share your confidence.

"She has devoted her life to her son's recovery and has attended seminars & rallies to increase awareness and force those in the government that mandate this vaccine timeframe,insurance industries & medical establishment to be held accountable."
Your daughter is undoubtedly a capable, loving, dedicated mother. I disagree with her advocacy efforts, and feel that efforts could be spent in much more promising pursuits.

"Do you honestly believe everything you are told? Without question, without doubt??"
My autistic son is 6. I have a 17-month old baby. Do you think I didn't do my homework on vaccines? One thing I don't believe is information that originates from internet-based anti-vaccination groups masquerading a "pro-safe-vaccine" groups such as Generation Rescue.

"You obviously did not attend this rally."
That is correct. I was busy planning my own advocacy effort - a presentation to self-advocates, parents and professionals this next week in San Diego about supporting autistics throughout their lifespan, as well as considering the damage that certain categories of rhetoric has on their self-esteem and the prospects of their inclusion in mainstream society.
"You have however taken to task the parents that felt passionate enough to attend. Your attempts to impose a guilt trip on them by using that worn out line "what will the children think" is lame."
I cannot make anyone feel guilty. If some aspect of my words ring true they may feel it, but otherwise...?
And I, for one, don't think questions about children's self-image is a worn out line. Read my blog for about 1000 examples of that statement.

"You feel that is your job as a father to a 6 yr. old autistic son to keep the world at bay. That and the other's that will use God as a scapegoat is also very disturbing to me. Yes, these children are God's gift but in His wisdom he also bestowed free will. My grandson will go forth into this world with a fighting chance thanks to his mother."
I wish your entire family the best of luck. Sincerely.

Anonymous said...

Your first erroneous statement was "vaccines are not in any way poisonous".

I think you may be correct here SusanE. Dose makes the poison. In a strict literal and scientific sense, to say that vaccines are "not in any way" poisonous is to overlook that fact. Even human breastmilk and the air we breathe are poisonous - in some way. Heck, oxygen is a potent cytotoxin. Which vaccines in the current schedule provide sufficient dose of a toxin to cause autism? Please be specific to the toxin(s) and the mechanism where by it(they) cause autism, and provide the appropriate supporting science.

You obviously subscribe to the "one size fits all theory".

Vaccine preventable infectious diseases do not discriminate, except between vaccinated and unvaccinated (or inadequately vaccinated), but I doubt very highly that Steve D subscribes to any "one size fits all theory". As an example, it's difficult to think that he would suggest that a child with a severe allergy to neomycin go ahead and be vaccinated with IPV.

We are all unique individuals and it is a fact that vaccines contain ingredients I would not feed my dog.

I agree. I would not expect a dog to live on mostly vaccine ingredients for very long. It's probably a good thing that vaccines are not food, nor served in food-like quantities at local eateries.

They can and, in fact, have tipped the fragile balance in autistic children.

Can you provide evidence of this? Please be specific to the vaccine ingredient(s) and the mechanism where by it(they) cause autism, and provide the appropriate supporting science.

I can also assure you that when and if my grandson reads your pompous rhetoric he will respect his mother for the warrior she is.

Hopefully, he'll respect her regardless of what others write.

I guarantee you he will never see himself as a victim or a "casualty."

I'm not sure such a thing can be guaranteed, but I would think loving parents and grandparents who work to make sure of that future, can have a pretty big influence on that outcome. Referring to autistic children (your own or others) as having "poisoned futures" seems contradictory to that, but open to seeing what you come up with.

She has devoted her life to her son's recovery and has attended seminars & rallies to increase awareness and force those in the government that mandate this vaccine timeframe,insurance industries & medical establishment to be held accountable.

A devoted mom is a great thing. I don't see how attending seminars, rallies, and demanding governmental accountability for something that has not been scientifically established, supports an argument in favor of the use of such signs, or an argument against vaccines. It looks a bit like an appeal to pity.

Do you honestly believe everything you are told? Without question, without doubt??

Did I miss the part where Steve said he believs everything he is told without question, without doubt? If I did, I apologize, otherwise, this does not amount to much more than a fallacious straw man argument (ad hominem too).

You obviously did not attend this rally.

Does attendance, or lack thereof, change that sign's message?

You have however taken to task the parents that felt passionate enough to attend.

Does being passionate about some message somehow exempt that message from criticism?

Your attempts to impose a guilt trip on them by using that worn out line "what will the children think" is lame.

You are certainly entitled to your opinion, but I also wonder what the children will think - someday. I also wonder how they will be viewed and treated by peers, teachers, the public, prosepective employers, etc. in the future if some of them are stigmatized as having "poisoned futures". I don't see how the message of a poisoned future contributes to their health, education, or well-being.

I also don't see any of the people who seem to espouse the view that their children or grandchildren are "poisoned" doing anything to be part of any solution. How much have they donated to bona-fide vaccine reasearch and development? How many are studying it or sharing their knowledge in immunology or toxicology to better vaccines?

You feel that is your job as a father to a 6 yr. old autistic son to keep the world at bay. That and the other's that will use God as a scapegoat is also very disturbing to me. Yes, these children are God's gift but in His wisdom he also bestowed free will. My grandson will go forth into this world with a fighting chance thanks to his mother.

I think many children go forth into this world with a fighting chance in large part due to their mothers (and in some cases fathers). I don't see the harm in questioning *what* kind of world one will go into - one where, based on a set of behavioral differences, an autistic person may need understanding and accomodations from time to time.

Anonymous said...

Many thousands receive vaccines and die from the illness that the vaccine is suppose to protect them from. Many millions do not receive some/all vaccines and still lead perfectly healthy lives.

Anonymous said...

"Many millions do not receive some/all vaccines and still lead perfectly healthy lives."

Herd immunity contributes to that.

Ginger Taylor, M.S. said...

Steve,

"This is a primary point of divergence in our world views, Ginger. I don't believe anyone did anything to my son.

Then perhaps no one did anything to your son. Not all cases that are diagnosed as autism are vaccine injuries, which is proven by the fact that there are completely unvaccinated children with autism.

But my son WAS injured by his vaccines. He meets the description of a child with "vaccine-induced encephalopathy" on the HHS web site under the VICP table of covered vaccine injuries. (a description that also describes children with autism).

The US government freely admits that, to the contrary of your hypothesis that vaccines are in no way toxic, vaccines can and do cause permanent harm and even death in some. They don't advertise it of course, you have to read the small print.

"Autism" after all is not really a medical diagnosis, it just describes a set of behaviors. I tells us nothing about what is going on in the bodies of these kids.

It is about as exacting a diagnosis as 'severe mental retardation'. You could find two people who met the criteria for that label but discover that one had Downs Syndrome and the other wrapped his mustang around a tree partying on his graduation night from law school.

From what I can put together, what is diagnosed as 'autism' is at least two distinct physical syndromes, if not more. Lumping everyone with that diagnosis together, without taking into account the myriad of physical differences going on in them, is part of the reason that so many still consider it a 'mystery disorder'.

"Nor do I expend tremendous energy and resources in, to use your words, grief and anger over the fact that he is autistic.

Well you have tweaked my words a bit there. There is grief and anger that he was made physically sick by shots because the medical professionals charged with his care did not take seriously their ethical obligations. That he did not have to suffer years of bowel problems, frustration and putting himself in danger on a regular basis.

You kinda make it sound like I grieve that my son is "not what I want him to be". I know that can be a generally accepted premise about parents like me in the 'hub'. I hope that you will at least ask me before you make any assumptions about things like that.

I am just as free to explore causes and treat my son's "autism" as you are not to do so.

"(As an aside, the children in the photographs you have posted were not with their parents at the rally, and may have felt more free to be more frank in their messages)."
I am a bit surprised you would make this point, seeing the number of autistic children and young adults that were at the rally. What is the impact of these parents' signs on other peoples' kids?


I made the point as the comments here suggested that people were worried about these specific children pictured.

As for what impact these signs may have had on other kids, I can only comment on how I dealt with it with my own children being there.

My youngest would not be able to read them.

But when he is old enough and able enough, explaining to him the source of his physical problems and cognitive differences is no different than explaining any other physical injury sustained early in life.

If he was a neurotypical child who had no right leg, and at 8 it finally occurred to him to say, "hey... what happened to my leg", there would be a difficult conversation about the drunk driver than hit the car he was in, we would have to spend time processing it, and part of that would be reinforcing that it does not change his value, and that the people in his life are crazy about him and that he is still the wonderful person that he thought he was the day before he found out the source of his "differentness".

And when he had going through the 'why me' and 'those bastards' and all the things he would need to go through, we would remind him that the plan was not to to grow bitter or depressed or be crushed by past misfortunes, but to play to your strengths and decide what your purpose in life is and do it.

We will teach him that his differences are not a spiritual problem or a devaluation. They are the hand that God dealt him to tackle.

Just like any one else with any other disability, no matter the cause.

My oldest can already make the distinction between his brother's physical illness and his objective value.

And the vital fact that one has no impact on the other.

He knows that his brother was healthy, got some shots that "were ok for me to get, but made Chandler sick".

He knows that we need to take special care of him now, because things are harder for him than for us, we have to be very patient with him, always watch out for him, and teach him the things it is hard for him to learn.

He knows that it is important to 'defeat autism' because the world can be a very unsafe place for people who have it. Like Chandler's friend Ashley who drowned last month because she didn't know that the water was dangerous.

And he knows that God gave our family a very special job that most people don't get. To get to have someone like his brother in our family. (because we don't 'have' to have Chandler, we 'get' to have Chandler).

And he decided that that he wanted to take his brother to show-and-tell and tell his class that if you see him on the playground, you should always say hi to him. If he doesn't answer you, that is ok, he is not ignoring you, he just has autism and might not remember to answer you.

He is really proud of his little brother. The 'source' of his brother's autism makes no difference.

Which I guess is a point that I want to make to the 'hub' community.

The cause of autism in point of fact, makes no difference in respect to the value of the person with 'autism'.

In terms of his value (or our enjoyment of him), it doesn't matter of Chandler is the way he is because of his genetics or his vaccines, because he caught a virus, because he was startled by a dog, because of invisible smoke trails from alien space craft, because of some secret conspiracy involving a ring of 33rd degree masons and the Disney Corporation, or any combination there of.

He is valuable because he is valuable.

He is loved because he is ours. And because he is so freaking lovable (Seriously, he is. You should meet him. The ladies flock to him and he is only six.).

To suggest, as your first commenter did, that we consider our kids to be some defective product that can't be returned is not only a little hurtful, it demonstrates a complete lack of understanding of WHY we are doing what we are doing.

It makes assumptions of our motives with out ever giving us the benefit of the doubt or a chance to clear up misunderstandings.

Just because their story is not your story, does not mean that their story is not true or that they don't love their kids and make them feel loved and accepted.

Look at my pictures again on my site and look at the care and attention and affection with which these parents (and siblings) are handling their kids.

I love my son as you love yours. But the autistic life is a difficult one, and despite the fact that there have been many things about it that have born fruit in our families lives, we don't want to have other families go through what our kids have had to endure if they don't need to.

So I have gone on way too long. I have a tendency to be a bit too verbose.

Thanks for respecting my wishes and my best to you and yours.

Wendy said...

Just curious are you vaccinated your 17 month old?

Anonymous said...

"Herd immunity contributes to that."

There has never been any for influenza.

Do you contribute it to herd immunity or lack of expose / active avoidance of virus?

Anonymous said...

Ginger Taylor F.O.S. writes:

"But my son WAS injured by his vaccines. He meets the description of a child with "vaccine-induced encephalopathy" on the HHS web site under the VICP table of covered vaccine injuries. (a description that also describes children with autism)."

The account closer to the time of diagnosis sounds more compelling and may be more reliable.

http://web.archive.org/web/20060117021222/adventuresinautism.blogspot.com/2005/02/introduction-to-chandler-birth-to.html

Was the terbutaline a factor? How about the gestational diabetes? What about those similarities to hubby?

The VICP table injury for encephalopathy is not descriptive of autism; not a single piece of criteria.

Ginger Taylor, M.S. said...

"The account closer to the time of diagnosis sounds more compelling and may be more reliable.

http://web.archive.org/web/20060117021222/adventuresinautism.blogspot.com/2005/02/introduction-to-chandler-birth-to.html


At the time I had to sanitize the account a bit as the pediatrician who administered the shots that my son regressed after was also a close friend, who I really loved, and who was an integral part of our mommy group that read the blog. It was a difficult time in our relationship, to put it mildly, as I started talking to our friends about Chandler's vaccine reactions, some of which were also her patients.

I was hoping that it would be a story that we could tell together, and that she would respond well after see his progress that first year, but it didn't work out.

You will note that in 2004 I talked about the chelation that we were doing, but I didn't use the word 'vaccine' on the blog for the first time until three days after the post that you referred to.

I avoided blogging about it as long as i could, writing only about his successful treatments, but when we were approaching a year after his diagnosis, and it was apparent that she would not be confronting this with us, it came time.

If you need proof that I have not changed my story, I should be able to provide lots of first had testimony that I talking vaccine injury from the beginning.

After attempts to handle the matter with delicacy, I added in the vaccine reactions to the piece you reference (I had not clued into the practice of noting when changes are made yet), but still have not put everything in that account.

Was the terbutaline a factor?

I think so. Duke says that it makes babies brains more vulerable to toxic injury (their study focused on pesticides). The Duke study came out to late for us though. But I don't think that docs are cautioning women who took it to be careful about their babies interaction with toxins. I never have been.

How about the gestational diabetes?

I have looked for links to that, but have not found studies or other mom's who had that. If you have heard of any relationship look at, let me know.

What about those similarities to hubby?

That is definitely a factor. His whole family displays a wide variety of related things. ADD, Dyslexia, autoimmune disorders, food sensitivities and the like. Genetics are absolutely in play in autism.

But are the genetic a predisposition to neurological difference or to toxic injury?

If my sweet hubby had gotten the same number of vaccines in the same combination, with the same toxic load, would he have gotten as sick as Chandler?

We speculate about that.

I am not sure if this part of his story is in that account or else where on the site, but when I met him at 15 in high school, he was so 'shy' that he could barely hold a conversation. Total AV geek.

In addition, he could not eat anything. He had horrible GI problems and was skin and bones.

Then in college he insisted that his mom take him to a nutritionist (she reluctantly did, saying she felt like she was taking him to a witch doctor). The Witch Doctor simply put him on digestive enzymes, probiotics and garlic, and his life changed dramatically.

In a few years he was healthy, was on the lacrosse team and when I saw him five years later, was shocked that he was now not only hot, but had grown a great personality. Until Chandler was diagnosed, we just always considered my husband a 'late bloomer'.

And when Chandler was diagnosed, the first thing is DAN doc did was change his diet and put him on the same supplements that helped his dad. (took us a few months to make the connection though).

But back to the main point.

Chandler could have had the genetic predisposition, a mito disorder, a brain made vulnerable to toxic injury and more, but until the shot was given, he could have stayed "autism symptom free".

But I was NOT given correct information on what was in his vaccines.

My first pediatrician (different guy, total jerk) told me that mercury had been taken out of vaccines completely, and did it in such a way as to let me know how offended he was that I even asked if it was still in vaccines.

Except that he said it in the fall of 2000, when most vaccines were still full of it, and then immediately injected my newborn premie with a full dose mercury shot.

From then on, I believed him and never asked again. I was not given informed consent.

Skip to 8 years later and we are still chelating the mercury out of my autistic son.

The VICP table injury for encephalopathy is not descriptive of autism; not a single piece of criteria.

What?! You don't think this in any way describes a child with autism???:

"1) Decreased or absent response to environment (responds, if at all, only to loud voice or painful stimuli);
(2) Decreased or absent eye contact (does not fix gaze upon family members or other individuals); or
(3) Inconsistent or absent responses to external stimuli (does not recognize familiar people or things)."

It ABSOLUTELY described my son when I walked him into his ped's office after his regression. It describes him now.

I hate to be so direct, but you are kidding yourself if you say this couldn't describe a child autism.

My son meets BOTH the DSM criteria for Autistic Disorder AND the VCIP criteria for vaccine induced encephalopathy. For him it is just two different disciplines describing the same thing.

I have also tried to go at this from the other end. To find a case of VIE and see if they seemed like an they had autism.

The only two I have come across are both cases from the vaccine injury compensation program that were awarded damages for their vaccine induced encephalopathy. Hannah Poling, who has been diagnosed with autism and Madison Hiatt of Pensacola, who the state of Florida and all her therapists and teachers consider autistic.

Again.. it is not the same thing for everyone. But it is for some.

If you know of any cases of vax/encephalopathy that DON'T also meet the criteria for an autistic disorder, (or any cases in general) then pleas pass the information along.

Ginger Taylor, M.S. said...

Found something new.

The merck manual says encephalopathy can also be accompanied by GI problems.

http://www.merck.com/mmpe/sec16/ch217/ch217c.html

Go figure.

Anonymous said...

"What?! You don't think this in any way describes a child with autism???:"

"1) Decreased or absent response to environment (responds, if at all, only to loud voice or painful stimuli);
(2) Decreased or absent eye contact (does not fix gaze upon family members or other individuals); or
(3) Inconsistent or absent responses to external stimuli (does not recognize familiar people or things)."


No. One could not make an autism diagnosis from those at all. Could it describe a child who happens to be autistic, yes. It could also describe a child who is unconscious, or has many other conditions.



"I hate to be so direct, but you are kidding yourself if you say this couldn't describe a child autism."

I did not say they couldn't describe an autistic child, I said the are not "DESCRIPTIVE OF AUTSIM," that is, they are not diagnostic of autism. I'll admit, my wording was a little sloppy, but the distinction is an important one. Hopefully it's not lost on you given your likely education in diagnostics.



Re: terbutaline; maybe it has nothing to do with vaccines.

It could influence genetics
http://www.ncbi.nlm.nih.gov/pubmed/16417856

It could influence development on its own
http://www.ncbi.nlm.nih.gov/pubmed/17400887



"Skip to 8 years later and we are still chelating the mercury out of my autistic son."

8 years? Is this a joke? What's the medical reason to chelate anyone for 8 years?

Ginger for my stomach? said...

Ginger if you had the slightest bit of credibility, if you had demonstrated honesty and critical thinking skills maybe people could believe you.

I don't believe for a second your child has encephalopathy, I think you have a pathological personality, though. You lie. Creatively, sure, but you lie and cover up your lies. Not pretty. Not nice. Not even Christian.

Shame on you.

Ginger Taylor, M.S. said...

Wow... don't really know how to address that.

Is there something specific you think I am lying about that you would like for me to offer proof on?

Tammy McNair said...

This is in reference to anonymous' statement....
-----------------------------------
It could also describe a child who is unconscious
-----------------------------------
You are joking right??? Sorry but that really made me laugh!!!

Cinnabar Man said...

Shenanigans.

I really can't believe that somoene would be so irresponsible as to chelate a child for 8 years. Either this is fake or somebody has drunk the kool aid and is now shoving it down a kid's gullet to satisfy some sick, innate desire to experiment on children.

Ginger Taylor, M.S. said...

"No. One could not make an autism diagnosis from those at all. Could it describe a child who happens to be autistic, yes. It could also describe a child who is unconscious, or has many other conditions."

I am not claiming you can make an autism diagnosis from what is listed on that page. The symptoms are a broader description than that of an ASD diagnosis. I am saying that a child suffering from it is not even evaluated for it because it also fits the description of autism.

My point is that a child coming into a doctors office should be given a MEDICAL diagnosis, which is what encephalopathy is. But peds don't do that. They look at a child that meets the criteria for enceph., never considers it, does not examine them, and calls it autism and refers to speech therapy.

The two diagnosis overlap and there is a group of people that fit into both. But only ONE diagnosis is given, and medical care that should have been offered, isn't.

And I don't even know that pediatricians are trained to screen for vaccine injuries. Because very few people want them to exist.

Many people want to believe that vaccines are ONLY good and could not possibly cause any damage.

Re: terbutaline, I will read what you posted.

"8 years? Is this a joke? What's the medical reason to chelate anyone for 8 years?"

Now my writing got sloppy.

Yes! We started chelating him two years before he was born! We wanted to get a jump start!

But seriously...No. I meant that once Dr. Mean Guy lied to me, I never check the vaccine ingredients again. We are still paying for his lie 8 years later.

Chandler was born two years later, we asked it if was safe to give him so many shots together, even our new peds said 'no problem' assured us that the autism thing was nothing, we believed them because mercury had been out of vaccines for years at that point Dr. Mean told us so. Turns out not to be so true.

Regressed after 18 month shots, spent several months in denial until others started commenting, took him to his ped who didn't examine him but sent him to speech, got the autism diagnosis, got his shot records, looked up the lot numbers, found Hg in his shots, went back to doc with the print outs of the vaccine package inserts with parts highlighted that I had questions about. He was very nice, but would not even read it.

Called him to ask about stuff, he blew me off. Finally gave up on my main stream peds, got him tested and found lead and mercury. Put him on the diet and with in two days he regained eye contact and started answering to his name again. Tried oral chelation and he called me "mommy" for the first time since his regression.

Chelated cautiously with oral for the first two years on and off. (never did get it all out)

Then last year he got a huge lead exposure so we started IV chelation and mercury is still coming out as well.

So don't worry. Chelating under the supervision of three doctors and the state of Maine.

Orac said...

"While we might disagree on things, I do appreciate open discussion of the issues surrounding the rally.

And were the subject matter not quite so personal I probably would not have a problem with you posting them.

But I still would like you to take the photos down."

Ginger,

Having seen this, I note that I acceded to your request to me as well to take a handful of pictures down obtained from your blog. I acceded because I wanted to take the high ground. However, in retrospect, I have to ask you: Did you take those pictures? Do you hold the copyright to those pictures? If not, then you had no right to ask me to take them down.

I would also point out to Steve D that he should ask the same thing: Please verify that you in fact took those pictures and that therefore you own the copyright to them. If I had it to do again, I would have asked you that before acceding to your demand.

A dingo ate my baby said...

Ginger states:

"But my son WAS injured by his vaccines. He meets the description of a child with "vaccine-induced encephalopathy" on the HHS web site under the VICP table of covered vaccine injuries."

I'm not so sure. The vaccine table injuries are fairly clear about time of onset for encephalopathy substantiated by medical redcords.

Pertussis-containting vaccine (0-72 hours)

MMR (5-15 days)

Ginger Taylor, M.S. said...

Orac,

Oh... sorry if I was too vague. Yes I took the pictures and hold the copyright.

And as far as time of onset.

Chandler had already had vaccine reactions. (His Hep B shot at two weeks set him into three months of crying and fevers and two years of bowel problems until we changed his diet. Those first few months were really difficult)

Each time I asked my peds about this stuff they didn't take it seriously. Just said, "some kids are like that" or some such thing.

At his 18 month shots, he got, among other things, another Hep B (same one he reacted to at birth) and DTaP.

But at first he didn't get more difficult, like the first time, he got easier to deal with.

So when he just got quiet, I didn't think much of it, because what i was used to, and was told was not a problem, was SO much more extreme.

And we are told our kids might feel a little sick after their shots, but don't worry. So I just assumed he was feeling puny.

Then my grandfather died and i was in a fog for a few weeks. I hate that I was not paying close attention to him at that crucial time. When I started to come out of that it was six weeks out I decided there was something wrong (the first time I took him out in public and demanded anything of him and he was really difficult to handle), but thought, "oh I am sure it will be fine". He is probably just reacting to mommy being sad or something like that.

When he didn't start talking again, I got worried, but told myself to 'stop trying to diagnose my son and just let him do what he needs to'. Then a friend said something and I knew it was time to face facts.

Later i went back to look at videos to see if I could figure out exactly what day he stopped talking and answering when we called, but there was a six week gap between his before and after.

I know that he didn't show symptoms before, and I have a record of symptoms six weeks after, but I never pulled his medical records, so I don't know what his doctors recorded.

Of course at the time we were just struggling to get by, and assumed that people would take our word for it that what we were saying about our son's development would be believed.

Had I known that with in a few months I would suddenly be considered guilty of lying at the get go and have to prove my innocence, I might have hired a camera crew to follow us around 24-7.

Should I be encouraging mom's, as a part of the vaccine safety precautions to be videotaping their kids daily for the two weeks prior to and following their kids shots?

a dingo ate my baby said...

"And as far as time of onset."

"At his 18 month shots, he got, among other things, another Hep B (same one he reacted to at birth) and DTaP."

Then it doesn't sound like he met the vaccine table criteria for vaccine-induced encephalopathy at all.

DTaP Encephalopathy (0-72 hours), with severity requiring hospitalization.

Encephalopathy is not a table injury for Hep B.

Anonymous said...

Ginger F.O.S. writes:

"Should I be encouraging mom's, as a part of the vaccine safety precautions to be videotaping their kids daily for the two weeks prior to and following their kids shots?"

Going on what dingo said, probably not. It's pretty likely that encephalopathy with severity requiring hospitalization is going to have a medical record~unless you live in the sticks.

Ginger Taylor, M.S. said...

And I am saying he did show symptoms in that time period.

...and you left out, "(whether or not hospitalization occurred)"

No one ever told me, "Hey if you vaccinate your child and he starts ignoring everyone, he should see a doctor because he probably needs to be hospitalized".

CLEARLY he needed medical care, as he has never been the same since, but as my docs never took my reports seriously before and never educated me on the symptoms of vaccine encephalitis, nor even mentioned its existence, why would I have recognized his, "Decreased and absent response to environment, decreased and absent eye contact, or his inconsistent or absent responses to external stimuli" as something that needed immediate medical attention?

Orac... do you tell your friends and family and patients and readers to watch their children closely for these symptoms after vaccination and get them to a hospital immediately if they start acting spacey? Do you school them on vaccine induced encephalopathy and tell them it is a risk of vaccination?

Perhaps docs should start printing out the VCIP table and handing it out as part of their vaccine information packet.

Oh wait... they don't even tell patients about it AFTER they have reported a vaccine injury, why would they warn them before.

If it had occurred to me for a SECOND that these were sign of his brain swelling up, you are damn right I would have had him in the ER in no time.

But again... if my doctors were telling me that three months of daily screaming and almost daily fevers were not even worthy of an office visit, why would I consider for a moment that he would need hospitalization for being spacey?!

BUT NO ONE TELLS MOMS TO LOOK FOR THIS, BECAUSE VACCINE INJURY IS SO RARE AND CERTAINLY DOES NOT LOOK LIKE ANYTHING THAT COULD BE CONFUSED WITH AUTISM IN ANY WAY! RIGHT???

Perhaps if doctors, instead of delivering the "benefits outweigh the risks" speech in the annoyed tone they do, and actually educated parents on what the symptoms of vaccine injury are, AND ACTUALLY PHYSICALLY EXAMINED children when parents suspect a vaccine injury, we might actually start diagnosing cases correctly at the time of injury and getting them immediate treatment to minimize the damage.

But honestly, I don't know that pediatricians even know what the symptoms of vaccine injuries are, except for seizing before the child leaves his office.

And why would they. The incoming head of the AAP, who they look to for guidance went on Good Morning America and claimed that there was no such thing as permanent vaccine injury.

Which brings me back around to one of my biggest complaints of the medical profession.

All they have to do continue to deny a relationship between vaccines and what is commonly diagnosed as "autism" is just not look for a connection.

Despite the fact that my son turned up in their offices with symptoms of vaccine induced encephalopathy, they did not ask me one question about it, I don't even think they asked, 'when did this start'.

They just called it 'autism' and sent him to a speech therapist.

Ginger Taylor, M.S. said...

It just occurred to me what that phone call to his doctor would have been had I been worried that he needed medical attention.

"DOCTOR, DOCTOR! Chandler is sitting quietly on the floor playing with his toys and freeing me up to get all my work done. He has not even had a fight with his brother today!

I am really worried!

Do you think that he needs hospitalization?!"

Anonymous said...

"No one ever told me, "Hey if you vaccinate your child and he starts ignoring everyone, he should see a doctor because he probably needs to be hospitalized"."

And they probably wouldn't. It's pretty clear that your interpretation of what "required hospitalization" means. That of trained medical professionals is likely to be quite different.

Hospitalization is required when the level of care provided at a hospital is appropriate, because the medical condition necessitates the increased level of care or medical intervention in order to sustain life, compared to visits to a physician's office, home care, etc.

I realize you may not like this or agree, but such is life.

Ginger Taylor, M.S. said...

You don't have to be a trained medical professional to read the page of symptoms and see if your child is displaying those symptoms. My son did.

He still does.

Should I rush him to the hospital now?

Because (to overgeneralize to make a point, the members of 'the hub' would tell me that these symptoms do not even represent a threat to my son's health, but simply a natural variance.

But HHS tells me that he needs a doctor.

The arguments here are getting absurd now.

If a child does not display extreme outward sympoms of encephalopathy, the only one of which on the list is seizure, then how is a mom to know what requires hospitalization?

So ultimately you guys are deciding that my son does not have it because his mother was not educated on the symptoms and seriousness of the phenomena to get him medical care?

Either he has it or doesn't. My reaction to it doesn't change what was going on in his brain at the time.

Anonymous said...

"If a child does not display extreme outward sympoms of encephalopathy, the only one of which on the list is seizure, then how is a mom to know what requires hospitalization?"

A marked decrease in level of consciousness is also an extreme outward sign (such as, in responds only to painful stimuli). No one is suggesting that a mom is supposed to know. I think the point is that, if taken to a doctor, there are cases where a physician would deem hospitalization neccessary to sustain life. I think that your interpretation of "whether or not hospitalization occurred" is intended for something else, but we don't need to get into that.

"So ultimately you guys are deciding that my son does not have it because his mother was not educated on the symptoms and seriousness of the phenomena to get him medical care?"

I'm not deciding anything, as I think that would probably be a decision that would require evaluation of medical records.



Generalization of hub members with a strawman argument, besides being incorrect, is unnecessary.

Alyric said...

"We are all unique individuals and it is a fact that vaccines contain ingredients I would not feed my dog. They can and, in fact, have tipped the fragile balance in autistic children."

Yes but not so unique that we can't handle the really small antigen challenges of vaccination =compared with living in a world full of the stuff - antigen challenges that is.

Somebody quoted possibly misquoted the head of the AAP as saying that vaccines have not caused permanent damage. Now that I find interesting. Just maybe, all this vaccine 'damage' - the real deal, not this anti-vax hysteria is the Hannah Poling type. There's a metabolic disorder there that's bound to show up some time and blaming the vaccines is simply the old fallacy of correlation equals causation.

Bev said...

Undoubtedly, the most serious consequence of the "vaccines cause autism" rhetoric lies in the number of parents discouraged from protecting the lives of their children and others. The results of this will perhaps remind us all of the proper use of words like "tragic" and "devastating."

There is another consequence which I find very disturbing. One need only to look at the comments on this post to see how quickly a discussion can be turned away from its original topic, when that topic was respect for autistic people. This is a topic of no importance to so many people it sickens me.

Yes, Steve, I find the images reprehensible. Much more discussion is needed on that. Is it acceptable to add words like toxic and damaged and images such as skull and crossbones to a child's photograph? I would say no.

Much has been made here of issues of intellectual property. What about the rights of persons not to be portrayed in a degrading manner?