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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And the verdict is...

... guilty on all counts.

While we wait for the verdict...

In May 2006, 3 year-old Katie McCarron was killed by her mother, Karen McCarron, who is on trial for the murder of her autistic daughter. The case is now with the jury, who have four options to choose from (guilty, not guilty, guilty but mentally ill and not guilty by reason of insanity) for each of the four counts McCarron faces. See Autism Vox for Kristina Chew's excellent coverage of the trial for more info.

I'm sure there will be plenty of analysis of the verdict once it comes in, the arguments in the case, and what it means to be autistic and the parent of an autistic child. But for now I'd like to repost something I put up in May 06, not long after Katie was killed. It was also around that time that I finally watched the Autism Speak's video, Autism Every Day.

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So what?

Ack!
Thbbbt!

That pretty much sums up my feelings over the past couple of weeks about autism news. I have the feeling this post is going to go long and wide, so consider yourself forewarned....

At last week's Senate confirmation hearings for President Bush's nominee for head of the CIA, GEN Michael Hayden was asked to comment on the value of 'targeted intelligence,' the process of gathering intelligence explicity supports a desired outcome. (If I remember correctly, it was asked by a Democratic Senator doing a bit of sneaky Bush-bashing.) GEN Hayden replied along the following lines - this is a paraphrase, I could not find an actual transcript:

I've got two great kids, teenagers. But if I wanted, I could put together a dossier on them that contained all the bad things they've ever done. This would be accurate, but would not tell the whole story. You would think these were the most rotten, evil kids on the planet. If all you are looking for, or expecting to see, is one aspect of a situation, then that is what you will get.

This exchange from the hearings kept popping into my mind as I read the many descriptions of the Autism Speaks video, Autism Every Day. I finally got around to watching that video today. Ack!! Thbbbt!!

This video is nothing if not targeted intelligence, the Autism Speaks equivalent of the 2003 State of the Union address and Secretary Powell's briefing to the UN on Iraq's weapons of mass destruction program. What is their goal? Well..., war of course. War on autism. But is this also a war on autistics? It's kind of hard to tell the difference.

About half way through the video, which to that point basically consists of a bunch autism parents - I should say autism MOTHERS - whining about how hard life is with autistic kids, I couldn't help think, "So what? Parenting is hard." In fact, I was going to write a bit about that, but Kev beat me to it:

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are far from the whole story.

Deja vu, anyone? (See the quote from GEN Hayden above.)

I was flabbergasted (to say the least) when one of the mothers in the video said that, except for the fact that she also had a non-autistic daughter, she would would have driven off the George Washington Bridge so her autistic daughter "wouldn't have to go to that school." Thbbbt!!! With the autistic daughter (8 or 9 years old) in the room with her. Ack! And then the non-autistic daughter said, "I wish I had a non-autistic sister." ...!!!... (words escape me here) Not I wish my sister weren't autistic, but I wish I had a different sister.

This of course leads into the story of the death of a 3 year old autistic girl at the hands of her mother. Much of the press, and most of the comments from the family and friends, seems to be along the lines of, "Poor woman, she was the mother of an autistic child and she just snapped. Please pray for her. It wasn't her fault."

Much of the whining (sorry, that's how it came across to this 13 year veteran of autism parenting) in the video was focused on how the autism negatively impacted the lives of the parents. "Sorry, I'd love to go get bagels with you, but I've got to go deal with my autistic child." "I couldn't keep the job I wanted." "This wasn't my choice. I'm not a therapist, I got drafted. I'm a parent of an autistic child."

Let me tell you a story.

A couple of days ago some friends watched their 6-year old son die, heard his last breath as he succumbed to terminal illness. About 3 weeks ago, their son's body began rejecting food from the tube. Nearly 6 months before that, he became unable to eat food (hence, the tube). For the past two years, he has been unable to move. An unbelievable amount of love and caring. Did they miss the things they could not do? Undoubtedly. Did it make their life hard? Yep. Did they whine about how miserable they were because of their sick child? Not a chance. Did they consider throwing him off a bridge? Puh-lease!

Life is hard. Parenting is hard. So what?
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As a rule I usually don't lash out at individuals or groups about their beliefs or actions, but this post was a rare exception to that rule. (So much so that I felt it necessary to apologize, kind of, in a follow on post.)

Blog business

It has been way too long since I've updated the appearance and performance of this site, and it is time to do some remodeling. I intend to keep posting, so if you read the actual site instead of a feed, please excuse the mess.

On the subject of feeds, I'm also going to convert over to a feedburner feed: http://feeds.feedburner.com/29Marbles. I'll have both available for a while to give folks a chance to switch over (if they are interested enough to go to the trouble), and then in about a month kill the blogger feed.

On the subject of blogger and remodeling, does anyone know of any good 3 column templates?

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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Rationality and emotions

How much does rational thinking influence your opinion on something? How about emotional thinking? Since this is a blog (mostly) about autism, you may think that is leading up to something in the vaccine/autism debate, but in this case I'm talking about a technology intended to help law enforcement catch criminals.

From the Wired.com article A New DNA Test Can ID a Suspect's Race, but Police Won't Touch It:

Frudakis' test is called DNAWitness. It examines DNA from 176 locations along the genome. Particular sequences at these points are found primarily in people of African heritage, others mainly in people of Indo-European, Native American, or South Asian descent. No one sequence can perfectly identify a person's origin. But by looking at scores of markers, Frudakis says he can predict ancestry with a tiny margin of error.

DNAWitness has been used nationally in nearly 200 criminal investigations. In several, the science played a crucial role in narrowing the suspect field, ultimately leading to an arrest. But its success hasn't made the technology popular with law enforcement.

"Once we start talking about predicting racial background from genetics, it's not much of a leap to talking about how people perform based on their DNA — why they committed that rape or stole that car or scored higher on that IQ test," says Troy Duster, former president of the American Sociological Association.

"This is analyzing data derived from a crime scene," Frudakis counters. "It's just a way for police to narrow down their suspect lists." But his position, rational as it may be, is no match for the emotions that surface with any pairing of race and crime.

Tony Clayton, a black man and a prosecutor who tried one of the Baton Rouge murder cases, concedes the benefits of the test: "Had it not been for Frudakis, we would still be looking for the white guy in the white pickup." Nevertheless, Clayton says he dislikes anything that implies we don't all "bleed the same blood." He adds, "If I could push a button and make this technology disappear, I would."

While this story is not about autism, I couldn't help but think of the mercury/vaccine debate when rationality was pitted against emotionalism. Both sides of the debate show their fair share of both, often accusing the other side of being overly emotional as a derogatory method of countering an argument (which, in all likelihood, is seen as rational by the one making the argument).

Which gets me back to the question that came to mind as I read the story and am curious what others think: In a situation when rational thought tells you one thing, is it OK to let your emotions rule your decision?

What would it take? (Or, Why the debate will never end)

Before you read the rest of this post, please take a moment (or, if you read as slow as I do, several moments) to read these two posts, by different authors, discussing the study Continuing Increases in Autism Reported to California’s Developmental Services System: Mercury in Retrograde and the accompanying essay Thimerosal Disappears but Autism Remains published in this month's Archives of General Psychiatry:

• Thimerosal Exposure Declines, Autism Rates Increase (Autism Vox)
• Making Sense of the California Autism Numbers (Age of Autism)

So, what do you think? Does the study prove anything? Disprove anything? If you believed before reading these posts that autism is caused primarily by thimerosal (or mercury in general), did reading these posts change your mind, or cause you to doubt that position? Conversely, if you believed before reading these posts that thimerosal / mercury is not a cause of autism, did reading these posts cause you to change your mind, or to question your beliefs?

On the Autism Blog at About.com, Lisa Jo Rudy hits the nail right on the head with this pessimistic (but unfortunately accurate) observation:

Knowing the autism community as I do, I find it hard to believe that these findings will change much of anything. Those who believe firmly that vaccines are NOT to blame for the rise in autism diagnoses will stand on these findings as proof positive of their claims. Meanwhile, those who believe firmly in the toxic nature of vaccines will continue to advocate for an end to required vaccinations - and for compensation for vaccine damage to their children.

In his article on Age of Autism, Mark Blaxill effectively quotes Karl Popper as a guide in his examination and acceptance of criticism to his theory:

He who gives up his theory too easily in the face of apparent refutations will never discover the possibilities inherent in his theory. There is room in science for debate: for attack and therefore also for defense...But do not give up your theories too easily--not, at any rate before you have critically examined your criticism.

But this then begs the question, at what point do you give up your theories. In discussing his conversion from atheism to theism (I believe Christianity, though he never comes out and says it) in his book There is a God, Antony Flew writes:

Now it often seems to people who are not atheists as if there is no conceivable piece of evidence that wold be admitted by apparently scientific-minded dogmatic atheists to be a sufficient reason for conceding "There might be a God after all." I therefore put to my former fellow-atheists the simple central question: "What would have to occur or to have occurred to constitute for you a reason to at least consider the existence of a superior Mind?"

Obviously, this question can go both ways, and can be applied to just about any partisan disagreement, including the one at hand. With that in mind, I'll rephrase the questions I asked above:

• If you believe that thimerosal is not a primary cause of autism, what would it take to convince you that it actually is?
• If you believe that thimerosal is the primary cause of autism, what would it take to convince you that is not?

Note: please don't respond with something along the lines of "nothing could make me change my mind because it is obvious that my belief is correct." If that it how you feel, then you don't have anything worthwhile to contribute to this conversation and I'd prefer it if you didn't clog up the comments.

The power of blogs

Last July, US Army MAJ Andy Olmstead wrote a blog entry to be published in the event of his death. MAJ Olmstead died in Iraq last week, you can read his final post here.

I have several items in my “to blog” basket, but I was thinking about this story most of the weekend and just couldn’t write about anything else. I’ve been trying to think of something to say, but in the end I think it speaks for itself and shows just how powerful blogs can be. (Others have been able to write a bit more on the subject, check out this page on the Rocky Mountain News for links.)

Autism and law enforcement

I've written about autism and law enforcement before, but in a time when it is becoming increasingly dangerous to be different it is worth mentioning again. The catalyst for this particular post is the NY Times article Helping Police Officers Understand Autism, which talks about the ongoing efforts of Dennis Debbaudt (who is an autism dad and, as it turns out, also provided the inspiration for my previous post on the topic).

Some key points from the article:

• People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001.
• [W]hen Mr. Debbaudt asked whether any of the police officers, from departments throughout New Jersey, had received training on autism, either at police academies or on the job, only a few raised their hands.
• Mr. Debbaudt said he had heard of 6 to 12 cases each year in which people with autism are harmed, hit with a stun gun or killed by law enforcement officials. He cited the case of Calvin Champion Jr., a 32-year-old man with autism who died in 2000 after Nashville police officers used pepper spray on him and subdued him.
• “We’ve heard from families as well as from professionals that they just need more instruction, certainly in terms of first responders understanding that a person with autism may not respond appropriately or may not respond at all when given a command,” she said.
• A bill cosponsored by [NJ] State Senator Loretta Weinberg would require autism awareness programs statewide for emergency medical technicians, police officers and firefighters. The bill was passed by the Assembly in March, and awaits action in the State Senate.

That last bullet sounds like a good idea that should be spread across the country to every state. (I'm going to see what, if anything, is being done here in Missouri.)

If you are the parent or caregiver of an autistic person, or if you work in law enforcement, you owe it to your self to check out Debbaudt's sites: Autism Risk and Safety Management and Police and Autism - Avoiding Unfortunate Situations.

The ideology and partisanship of autism

In US politics, we've got Republicans and Democrats, also known as the Conservatives and the Liberals. (Please feel free to substitute the two main political parties from your country if you are not from the US.) I don't know if the following is accurate, but I remember hearing it somewhere in the seemingly constant barrage of US election year news: 30% of the population is Republican, 30% Democrat, and 40% Independent. Kind of makes sense if you think about it in terms of the "bell curve" and normal distributions in a population.

I've come to think that the same may hold true in the world of autism ideology. I use the term ideology quite deliberately here. From dictionary.com, ideology is defined as:

• the body of doctrine, myth, belief, etc., that guides an individual, social movement, institution, class, or large group
• such a body of doctrine, myth, etc., with reference to some political and social plan along with the devices for putting it into operation

On the one hand, there is the ideology of neurodiversity, defined on wikipedia as:

...an idea that asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be tolerated and respected as any other human difference.^[1] The concept of neurodiversity is embraced by some autistic individuals and people with related conditions, who believe that autism is not a disorder, but a part of their identity, so that curing autistic people would be the same as destroying their original personalities.

On the other hand there is the ideology that believes that autism is indeed a disorder, an abnormality in development caused by various environmental insults to a fetus or young child that must be cured in those that are currently affected and prevented in the future. The most commonly blamed environmental cause is mercury in the form of the thimerosol preservative used in vaccines, and more generally the large number of vaccines now on the vaccination schedule for young children. (The term "curebie" is sometimes used to describe this position. Although there is not an official "curebie" site like there is for the neurodiversity movement, check out The Age of Autism for more info on this position.)

Just like in politics these two "parties" have within them a broad range of beliefs, from the extreme ("all autism is mercury poisoning" and "society should accept and accommodate everyone, no matter how different") to the moderate ("we need to make society aware of the special needs of our autistic kids - and adults - and help those kids and adults make their way in the society to which they belong"). And, again like in politics, you have that overlapping area where the moderates of the opposing parties seem to be more like each other than the extreme element of their own party. (You may have noticed that I only gave one example of a moderate view, instead of separate ones for each party.) It is in this middle, the meeting point between the moderates of the two parties that you find the independents.

If you've read this blog for a while, you know that I fall somewhat in the middle, though I lean a bit more toward the neurodiversity side. But sometimes I get very frustrated at the whole discussion, the absolute statements from both parties that leave no room for deviation from the party line. I believe that this can be dangerous in politics, I also believe it to be dangerous in our efforts to understand autism and its affects on society. And at times, I feel like just dropping out of the discussion altogether because it just seems to be the same things over and over again.

But then I'll come across something like ...there of necessity will be much arguing from Dave Snowden of Cognitive Edge that makes me remember why I continue to write here:

If something matters, it is worth arguing about; consensus is for the ordinary and inconsequential things of life. Of course it does need good [wo]men if argument is not to degenerate into bitter polemic. Exploring ideas, supporting a position you do not necessarily believe in to test an argument, taking a contrary view for the sake of argument are all mechanisms by which human knowledge can advance.

I have seen the discussion about autism "degenerate into bitter polemic" all too often, and would like to think that I am one of the "good men" that help advance our collective knowledge about autism and what to do about it. I'm not much for New Year's resolutions, but for this year I resolve to continue the discussion, stir the pot, and keep the arguments as honest as I can.