Tag Archives: thimerosol

Just a plain, ordinary, loving, proud parent

I started writing about autism, specifically about being an autism parent, just over three years ago. One of my goals was to provide information that would be useful for parents who have recently received a diagnosis of autism for their child. This post is my attempt to give you, as a parent of a newly diagnosed autistic child, an idea of what you will likely find as you try to understand what that diagnosis means to you and your child.

Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean. How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc.

It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing. A few things you can expect to hear from others, or read in blogs, etc:

“You’re going to screw your kid up if you get him vaccinated.”
“You didn’t vaccinate? Why the hell not?”

“If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
“If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”

“Why are you trying to mainstream him at school, he would be better off in a special placement.”
“Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”

“You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
“Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”

“You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
“Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”

These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.

In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause). Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure. These are all things you will have to decide for yourself.

As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure – sometimes referred to as recovery – him through diet or other medical treatment. There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy. Importantly, the vast majority of these advocates are not autistic themselves.

Once you realize this, you will discover a separate world of autistic advocates for autism. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured. You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.

About two months ago, autism blogger Lisa Jo Rudy challenged parents to “quit autism for just one day.”

Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.

Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.

Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting. My response to Lisa’ challenge reflects this attitude:

Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.

I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.

I am, to use your words, “just a plain, ordinary, loving, proud parent.”

Every day.

Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent. Everything else is just details.

They shoot horses, don’t they?

The anecdote The Family Doctor , published by Julie Obradovic on Age of Autism a couple of months back, is a well told story of how she finally succeeds in converting her brother, a pediatrician, to her understanding that vaccines are bad and likely a cause for autism. If you are new to the question of autism and its causes, and come across this story early on in your search for answers, chances are it might be pretty influential.

But something has been bugging me about the story since I first read it. I couldn’t quite put my finger on it, so I haven’t written about it until now. It was a discussion I had with Autistic Bitch From Hell in the comments to my recent post A View From the Middle that made me realize what was so troubling to me about the story.

Here are Obradovic’s brother’s thoughts on autism and an autistic child:

“I tell you, I would rather she got Polio than Autism. At least her mind would be in tact. At least she could talk to me, experience life with me. No offense, but some of the stories you send me about these kids? Well, if they were horses, they’d be put down just to ease their misery. What parent can watch that, or live with that? What child deserves that?”

In other words, an autistic life is not worth living. And an autistic child is not worth parenting. With this mind-set, it is no wonder that they want to find a way to eradicate autism.

I just hope those of you trying to learn more about autism take this attitude into account when you read stories and opinions about vaccines as the cause of autism.

How much risk is too much?

In a comment to Lisa Jo Rudy’s brief examination of some of the issues in the autism-vaccine debate, Dadvocate had this to say:

Rather, it is that some, in their zeal to promote public health may be erroneously accepting a level of adverse reaction risk that is too high (and possibly avoidable by reverting to a more conservative schedule)….

The obvious (to me) question from this is, “Given that the current vaccine schedule results in an unacceptably high risk of autism in vaccinated children, what level of risk is acceptable? If the current risk is 1-in-150 (which, I should note is actually the prevalence and not the odds of being autistic), what risk is acceptable? 1-in-500? 1-in-1000? 1-in 10,000? None?”

This question is really for those who believe that vaccines are to blame for autism, and is but one strand in a much more complex thread. Among other things, the risk of individuals becoming autistic would need to be weighed against the risk to the public at large of reducing vaccinations.

At the risk of retreading old ground, exactly where do you think the balancing point would be between protection of individuals from autism and protection of society from communicable diseases? (If you don’t think this is a valid question, by all means let me know. I’m interested in that possibility as well.)

A view from the middle

I had lunch with an old friend recently, and the topic of conversation wound its way to autism. I, of course, am the parent of an autistic son. As it turns out, his nephew is also autistic. He wanted to understand autism, and I wanted to help him understand. But I didn’t know where to start.

Sure, there are many angles from which to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in.

As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here).

To tell the truth, I don’t know what to believe about autism. And it is not for a lack of trying. This post, according to my WordPress stats, is my 201st posting to 29 Marbles. I have covered a lot of autistic ground in the last 3 years. Over the course of those 3 years, and 200 posts, and numerous comments to other blogs by parents, autistics, and others with an interest in autism, I’ve considered a lot of different ideas and seen my beliefs and thoughts about autism oscillate a bit as I considered new things. I always seem to come back to the middle though, where I don’t really know what to think.

Over this time, I’ve also had the opportunity to observe how the views of others have evolved. In most cases, it seems, the longer someone has been blogging and thinking about autism the more their beliefs, and their blogging, have gone toward the extremes of the debate. Just check out Age of Autism (for the extreme view of the bio-med position) or Neurodiversity.com (for the extreme view of neurodiversity).

The thing is, I don’t really believe any of those things. Or, maybe it would be more accurate to say I believe in all of those things. Autism is, after all, a spectrum of disorders, so it only makes sense that the causes and cures (assuming either exist) would constitute a spectrum as well.

For someone to say that all autism is nothing more than mercury poisoning is irresponsible, though I don’t doubt that at least one case of autism could be traced directly to mercury. To say that all autistics live miserable lives and will never be happy or able to live and function on their own is simply untrue, though it goes without saying that there are some autistics whose life will be exactly like that.

On the other hand, to say that all autism is solely the result of genetic factors – with no influence from environmental triggers – is irresponsible, though I sincerely believe that some cases of what we call autism are indeed purely genetic manifestations. To say that all autistics have the potential to live happy lives and live and function on their own is as untrue as the opposite example above, though obviously some autistics will find happiness and success on their own.

Some will say I’m just wishy-washy, a waffler, a flip-flopper. I prefer to think that I’m simply staying open minded, because when you get right down to it not all the evidence is in. Not even enough evidence is in to say anything specific about autism in general.

And that, I think, is my point on this, World Autism Awareness Day. If you are new to autism, because you have a newly diagnosed child or you are just curious, enjoy the view from the middle for a while. Listen to what the extremists and fundamentalists have to say and think about it for yourself. Pay attention to your own instincts. Get to know your child – as he or she is, not how you wish they were – and figure out what YOU think is best. Not just for the child, but for you. For your spouse. For your other children.

There is no simple answer, no matter what you hear, and there is no simple path to follow as you make your way through the world of autism.

The Autoimmune Epidemic

While wandering the aisles in the local Borders book store, I saw Donna Nakazawa‘s new book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope. This description is from the book’s official site:

Multiple sclerosis, lupus, Type 1 diabetes, rheumatoid arthritis, and nearly a hundred other chronic autoimmune illnesses are part of this devastating epidemic, in which the human body, acting on misread signals, literally begins to destroy itself. Alarmingly, the occurrence of many of these diseases has more than doubled in the last three decades, signaling a disturbing trend that can be directly tied to environmental factors in everyday modern life—including our daily exposure to a dizzying array of toxic chemicals.

With the conversation around a recent post fresh in my mind, I was drawn to the book to see what the author had to say about autism in the context of this autoimmune epidemic. There is one section, consisting of two pages, where she mentions the possible relationship of autoimmune issues, vaccines, and heavy metals (specifically mercury in the form of thimerosol) to autism. I don’t recall the specific wording, but she basically left it as, “We’ll have to wait and see what comes of the research.”

Has anyone had a chance to read this book yet? Any thoughts?

Not in my backyard: Vaccines, autism and acceptable losses

In her post The AAP vs. Eli Stone (January 2008), Ginger Taylor at Adventures in Autism tells the AAP that her son is not “an acceptable loss in the war against TREATABLE viruses” (emphasis hers). The steel trap that is my mind (ha!) remembered that Ginger had brought this up before when talking about vaccines. In Where I stand on vaccines (June 2005), Ginger wrote:

The CDC’s vaccine policy is based on the principle that the good done for the many outweighs the harm to the few. And that is fine if you are making vaccine policy for 300 million people. But I am not responsible for holding back another Rubella epidemic; I am responsible for two little boys who just may fall into that sliver of the population that the CDC considers an acceptable loss. (my emphasis)

An anonymous commenter responds:

YOU are not responsible, but you do share that responsibility with all of us parents. If enough parents assumed your attitude, pertussis, mennigitis, and perhaps even measles would make a deadly comeback. I’m not saying you must vaccinate, the risks/benefits must be evaluated carefully. But if you choose not to, please acknowledge dropping your share of responsibility for the good of all children for what it is – selfish. Please note that I do not consider selfish anything more than a decision taking only you or your children into account. It does not mean you are an all-bad person.

I’ve thought about this very thing quite often when looking at the vaccine question. Does any single parent have any responsibility to “hold back another Rubella epidemic?” I’ve come to the conclusion that no, they don’t. Though the commenter takes great pains to say being selfish doesn’t make Ginger a bad person, the fact that he had say that at all points to the general feeling that being selfish is bad.

But, and this is a big but, everything that everyone does is for selfish reasons. I’ve written about this before in the context of behavior in the world of business, but the general principal is the same. Every action that we take, or influence, or try to make happen, we do because we want a benefit for ourselves or someone we care about. The Founding Fathers of the US knew this fact, and they also realized that this is the only way it can be if the fundamental freedoms they believed in were to be realized. (This is also why you can’t, and shouldn’t, try to get rid of Congressional ‘ear-marks’ .)

The obvious pop culture reference here is Star Trek II: The Wrath of Khan. Spock was right that the needs of the many outweigh the needs of the few, but Captain Kirk was just as right – maybe more so, considering what happens later – in not accepting this “axiom” in this case.

The AAP, and others, have gone overboard over Eli Stone, if you ask me, but this is how it should be. I’d expect nothing less if the tables were turned and the proverbial shoe were on the other foot.

The power of pop culture (redux)

A lot is being said about the pilot episode of ABC’s new legal drama Eli Stone, in which the title character successfully sues a vaccine manufacturer on behalf of a family who believes their son’s autism was caused by the vaccine (or, more accurately, an extra substance in the vaccine). Instead of discussing this show in particular, I decided to re-post this from last February. (The bold passages toward the end of the post were added for this re-post.)
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I will be the first to admit that I am a huge consumer of pop culture. I like to watch good TV (no, it’s not an oxymoron) and film, I keep up with the latest in music (yes, some of it is awful), love video games, and read the occasional novel (though most of my reading these days is non-fiction). It comes through every now and then, like in my October post “Every soul is perfect” – Is there autism in heaven? (Redux), a reflection on how autism was treated on the CBS show Ghost Whisperer.

In response to that post, Ian Parker submitted the following:

Um, regarding heaven and ‘perfect souls’, I would hope that people do not determine their religious beliefs based on the pseudo-religious-philosophical musings of the writers of Ghost Whisperer. At least take the time to consider what Homer has to say before coming to any final decision on such weighty matters.

I share Ian’s hope that people are smarter than that, and am doing my part by helping my sons understand what they consume in a smart way, I am a bit of a pessimist when it comes to actually thinking this is the case (a rare instance of a glass-half-empty feeling on my part).

For good or ill, pop-culture is a driving force in many (most?) people’s perception of the world and their actions in the world. Because of that one episode of Ghost Whisperer, I would venture a guess that many people’s perceptions of autism now include one of “imperfection” here on Earth, the image of a “lost soul” trapped inside an uncooperative body.

Why am I re-hashing this, you may ask. These thoughts came to mind as I came toward the end of Roy Grinker’s new book, Unstrange Minds. In it, Grinker relates the story of how a popular film in Korea has helped reshape Korean attitudes about autism in a positive way. From the book (page 256-257, sorry for the long excerpt):

That month a low-budget Korean film entitled Malaton (spelled the way the main character pronounces the English work “marathon”) was released. The film was based loosely on the real-life story of a young runner name Bae Hyong-Jin. Bae worked part-time on an assembly line in a tool factory when, at the age of seventeen, he ran a marathon in Chuncheon, Korea, in 2 hours 57 minutes. While not anywhere near elite runner times, which are under 2 hours 8 minutes, Bae’s time was enough to earn him national recognition. Why? Because Bae Hyong-Jin has autism.

But the film is not about running. It’s about the complexity of autism as a disorder and the problems people with autism confront in their family and social lives. it is one of the most realistic and compelling cinematic representations of autism that I’ve ever seen. The film was made after the Korean media began to publish stories about people with autism. The media had begun to publish the stories because parents, informed by the Internet and the international media, started to talk about autism in public.

Within one month after its release, more that 10 percent of the Korean population had seen the movie, and it was the second-largest moneymaker in the Korean film industry in 2005. Largely as a consequence of the film, millions of Koreans have a least a basic understanding of autism. On web site chat boards, disability rights advocates, parents, and educators in Korea are claiming that more diagnoses are being made, that people are more willing to bring their children with autism out in public, and that educators are more willing to accommodate children with autism in their classrooms. No one knows whether these changes will last, but optimism is sweeping the country. Parents of children with developmental problems think that their children may have brighter future than they previously imagined.

While autism is much more public in the US than it is in Korea, there is still a lot of ignorance of what exactly autism is, what it means, how it should be handled, etc. Any news story, TV show, or film that deals with the topic is absorbed by a curious public. And, in the absence of any other information (that doesn’t require actually going out and finding it), what people see from these sources is what they will believe, what they will think is the truth.

What if the film the Koreans had seen were Autism Every Day? Their pre-existing stereotypes would have been confirmed. Here in the US, what if Autism Speaks had had the budget to put up a couple of spots during the Super Bowl, with the largest single TV audience in history? What if NBC had broadcast the Super Bowl?

As much as we may wish it were not so, we can’t ignore the power of pop-culture and the influence it has had, and will continue to have, on the public perception of autism.
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On vaccines and autism

Last week I asked the question: What would it take to change your mind? I figured I should probably think of an answer for myself, this post includes some thoughts from my contemplation. This is not a complete argument for or against anything that I haven’t already stated, just some thoughts in process. Any thoughts of yours are certainly welcome.
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I don’t believe that autism is mercury poisoning, I’ve said that before. As for the number / types of vaccines being a trigger (I don’t believe it is a cause in the Newtonian sense), I’ve been thinking about it lately but haven’t seen any data to help me make a my mind.

Along those lines, the Age of Autism (which is, I must note, very openly of the opinion that mercury in the form of thimerosol in vaccines and/or the number of vaccines given to kids is the primary cause of most autism) yesterday pointed to the 2008 pediatrics vaccination schedules (0-6 years and 6 years and over).

WOW!!

That was about all I could think when I looked at the schedule. The schedule in and of itself doesn’t lead me to believe anything different than what I knew before, but it does give me an extra data point. The human immune system is an incredible, incredibly intelligent, incredibly complex system. (Though I’m sure there are many books specifically on the subject, The Genius Within includes a very description of how the process works.)

The challenge with a complex system (as opposed to a merely complicated system) is that the outcome of any given input to the system can not be predicted and that a specific cause for a measured outcome cannot be identified. From Dave Snowden (who thinks about complexity a lot):

  • Complex systems can not be predicted, they are non-causal (taking cause in its normal Newtonian sense) in nature they evolve and the same thing will not happen again twice, we can predict aspects of the system and different aspects of time but never the outcome of the whole system
  • The concept of a non-causal system is a very difficult one to grasp as the west abandoned the idea at the time of the Enlightenment (Vico and others were prophetic in arguing against this).
  • A complex system can be simulated – which increases understanding but simulation should not (although it is often) confused with prediction
  • We can understand starting conditions as a complex system evolves and we can influence their evolution if we focus on barriers and attractors (1st and 2nd order constraints) but not if we look at the end point (so attempting to predict makes things worse not better)
  • Humans tend to premature convergence (seeing a pattern too quickly before it is stable) and also to retrospective coherence (implying past causality where there was none). Both of these tendencies are pervasive and dangerous

Which brings me to a very interesting dilemma:

  • If autism (has a cause and) is indeed caused by an insult to the immune system, we can not predict which vaccine or combination of vaccines will cause it; and,
  • Once autism is caused in an individual we can not look back through their vaccination history to determine which vaccine it was that did the causing.

And this doesn’t even bring into play the complexity of the interaction between the immune system and the rest of the body or the role of genetics, and genetic predisposition.
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