Eli Stone/Austism Comment

In a post yesterday, I discussed the Eli Stone/Autism controversy. I watched the episode and find its attitude problematic. During the testimony by the mother of the autistic child, she said that "one week he was a healthy, happy child, the next week he had autism." This is meant to illustrate the impact of the vaccine on her son. But, I'm sorry, that's just not how it happens.

As I mentioned, autism is not isolated to the brain, but the neurological impacts stand out as developing so late in the your child's life. It's almost as if you remember a more normal time and wonder what happened. As you learn how the other problems with the body inter-relate with the neurological problems, you realize the signs were there much sooner that anyone could have known.

It is a condition, but I'm not willing to say its a sickness, at least not in the high-functioning case. Its tough, because without it your child would not be who he is and who he is amazing.

The portrayal of autism on Eli Stone as the tragedy of the once normal child lost to a vaccine (and by implication, corporate greed) is a soft, but stinging, insult. But, at least, it does help crystallize your own feelings.

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Favorite Moments from Tonight's Episode:

Sawyer's solicitude for Hurley on their trek through the Jungle
Jacob's movable shack
Charlie's message to Hurley
The Game of H.O.R.S.E.

One thing this episode illuminates is the extent of Jack's stubbornness. Since Hurley's flash forward predates Jack's from the third season finale, we know that once Jack fully realized his error he was crushed. As Lost comes to an end, one fascinating component of it will be how it closes its exploration of leadership, which has included the struggle between Jack and Locke and the cult of personality that is Ben. However, from the beginning, the show has established Jack as the ultimate and true leader of the group, but his leadership has been uneven, fuelled by an inner-rage, and now proven to be terribly misguided. Many great leaders make horrific mistakes before reaching glory. I personally would love to this arc resolved with Jack redeemed. But whichever way it ends, one of the legacies of Lost will be that it contains one of the most enduring commentaries on the nature of leadership in the history of popular culture.

Eli Stone and the Marvelous Children

Apparently, there has been a controversy stirring regarding the new ABC show Eli Stone. In the pilot, the title character, who is a lawyer, wins a case based on the accusation by his client that vaccinations caused her child's autism. The American Association of Pediatrics is upset, CNN provides background here. Some sample blog sentiment here and here.

While I believe that using mercury as a preservative for infant vaccines sounds idiotic on its face, I do not believe that it has caused autism (the preservative thimerosal is no longer used in common childhood vaccines (see here), but it is possible that your doctor may have old stocks of vaccines and you may want to request a thimerosal-free vaccine). While Rolling Stone argues that the mercury-vaccine link is unassailable (article here, via TV with Meevee), the science has been building to dispute it. More damning is the biological logic of this science.

One of my favorite sources on autism is the UC Davis MIND Institute which posts video podcasts of lectures by leading scientists in the autism field (also available from iTunes). This is unfiltered science from the source. In some cases, I believe, the lectures include results from ongoing studies, so the science is literally cutting-edge (though not necessarily peer-reviewed).

One of the best lectures is given by Dr. Nancy Minshew of the University of Pitt (program description here). She describes the multi-system nature of autism, which, though not well known by the general public, impacts the brain, the immune system, and the gastrointestinal system. As she states, this kind of presentation is typical of a genetic disorder. If you have a mutation in your genetic code, it will not limit itself strictly to the brain, it will impact your entire body. And it does.

She also discusses the likelihood that the prevalence of autism in the past was much higher than anybody could have known because of the institutionalization of mentally ill people and how these people were treated. Today, it is recognized far more commonly. The diagnostic tools are much improved. While a diagnostic cause for the "autism epidemic" is downplayed in the Rolling Stone article cited above, Slate has a nice article about the book Unstrange Minds. The book explores how the increase in autism is a function of evolving diagnostics.

In the Slate article, it is mentioned that autistic children are called "Marvelous Children" in Senegal. It is true.

That is probably the biggest trouble I have with a show like Eli Stone stoking the fear-mongering against vaccines. Behind the campaign against vaccinations is the idea that autism is a horrific outcome for a family, a "sueable" outcome. In severe cases, it is true that it is an extremely difficult burden. In many cases, the children are high-functioning and have subtle differences from typical children. These differences are sometimes frustrating, sometimes heart-breaking, but also sometimes amazing, sometimes marvelous.

I think the fear that Eli Stone and the media in general have generated makes it much more difficult for parents to consciously recognize that their child may have autistic symptoms and seek help for the child in a timely fashion. That's the ultimate outrage.

So, while Gregg Easterbrook believes that TV causes autism, my only warning is that TV may lead to a warped perspective.

(P.S. I believe that the problem with mercury vaccines is not that they cause autism but that are autistic children are less able to healthily process vaccines with mercury due to their gastrointestinal problems. This article discusses a study which shows that children process mercury much faster than previously believed, but this quote sums up a major hole in the study:

But Isaac Pessah of the UC Davis MIND Institute pointed out that the researchers
had only studied healthy children. They didn't address "the key issue of whether
a subset of kids with metabolic disorders would handle it

The Year of Living Dangerously

One trend I've noticed recently is a cultural blowback against over-protecting our children. The Dangerous Book for Boys is at the forefront of this trend, but something else along these lines that really piqued my interest was a TED talk given by Gever Tully (Note: there are hundreds of video TED talks available through iTunes and many of them are fascinating. They are short, snappy, and powerful. The TED Web site is here). Tully has founded the "Tinkering School." The concept of the school is to allow children to mess around things that they are underexposed to because many parents that think they are dangerous, including knives, fire, and technology.

A TED talk in which J.J. Abrams mentions the impact his grandfather had on him, particularly in the way his grandfather allowed to mess with technology reinforced my conviction that I had to act on Tully's advice.

Well, today I got out an old HP computer and let my sons help me take it apart and the result was smashing. They were fascinated and my oldest son took a real sense of pride in the whole endeavor. Hopefully, it is a first step toward a relationship to technology that my family has a rich history in but I have not carried on quite to the level of my grandfather, who is a lifetime tinkerer.

There are so many reports about America falling behind in science and technology and the lack of hands-on experience may be a major part of it. So, if you have some old lying around pcs, don't recycle, destroy.

(Of course, we can only hope that maybe the LEGO Mindstorm will inspire a new generation of innovators).

Technologies accelerate, Humans not so much

One of the foundations of the Singularity is the concept that technology is self-accelerating and that at some point it will become self-improving. I have not seen the self-improving part so much, but over the last few years I have seen the self-accelerating part.

When I started in my current field, GIS (Geographic Information Systems), in 2002-2004, digital geography was still in its nascent form and it was being utilized in a powerful, but not world-historical transformative scale. Its strange, I come into it at a time that was still relatively innocent, when you could put together a digital map and feel relatively impressed with yourself. That early experience has given me just the right amount of perspective for what has followed. I think this podcast (scroll down to the 2004 area and look for David Rumsey) by David Rumsey captures the pre-2005 mood perfectly. GIS was an exciting field and there had been many efforts by many devoted people to spread the information to the general public.

Then, Google Earth arrived and everything changed. Virtually overnight everybody's connection to geography changed and the expectations went through the roof. You can still impress people with a nice, clean digital map, but it is an order of magnitude more difficult to find such a person.

However, the scary thing is that the changes are just beginning and the advance of GIS technology is far out-stripping the ability of most people to capitalize on it (this applies to me and the people I work for and with). The revolution is only starting. There is a convergence of technologies occurring that will totally transform our relation to our world within the next decade. Many people have a limited exposure to these technologies through Google Earth and Microsoft Virtual Earth, but these only offer a small peek of what's to come.

Today, I listened to an intriguing Long Now podcast by Paul Saffo, a forecaster associated with Stanford University. In the podcast, Saffo mentions that the 80's were the decade of cheap processing power (the advent of the personal computer), the 90's were the decade of the cheap laser (the advent of fiber optics and the networked world), and this decade will be the decade of the cheap sensor. He right on because I've seen it in action in GIS, real-world (not quite real-time) sensing has gotten much more affordable. That's why Google and Microsoft have been able to invest in it on a Nationwide scale that the government could not even have imagined.

Combined with computer processing power and networking power, the ability to create models from this newly available sensing data has grown exponentially. It will not be long before we will be able to view a functional mirror world model of the real world that is a near perfect representation of the real world.

There are five key technologies involved in this transformation, these include LiDAR (laser-based sensing of the Earth's surface), hand held GPS, street-view GPSed photography (now viewable on Google Maps), cheap digital color orthophotography (straight down view), and oblique photography (the "bird's eye view" now available on Virtual Earth). While all these technologies have a certain "wow" factor on their own, the meat of them is the advancing, but still infantile, ability to pull these technologies together and create models. One demonstration of a model I recently saw was breath-taking.

As impressive as these technologies are, the amazing part to me is the utter lack of applicability these things have to most people in comparison to the richness present in the data. The data is extremely valuable, especially in comparison to price, and there is money to be made by the people who really figure out how to make it applicable to the average person.

Experimental Man

I just wrapped up viewing an intriguing power-point by David Ewing Duncan which summarizes his effort to create a comprehensive portrait of his health and body at its deepest levels, including his genetic make-up and the toxins present in his body. The results and his journey will be reviewed in book coming out later this year. Duncan is attempting to provide a window into the future of individual health-care utilizing cutting-edge diagnostic tests and I'm guessing he will hint at some of the downsides of these tests (he references the film Gattaca in his power-point, which is a solid and moving investigation of a future ruled by genetic engineering).

Efforts are currently underway to develop a $1,000 personal genome sequence (link). Some of the tests, like the EEG, are quite common, others are rarer. But the power of these tests isn't necessarily one or the other in a vacuum, but the sum of them, and that what is interesting about Duncan's project, in how he is trying to synthesize them.

This new era of health care is fascinating, even more so because members of my family are participating in it. We have had an fMRI test and are scheduled for limited genetic testing for one of my sons. Our hope is to prove a negative, but it is comforting to have the option to check.

From my experience, there is still a staggering amount to be learned about the brain and the body. But there is also a staggering amount of new things being learned about the brain and body that are demystifying them ever so slightly. In the long run, I think we will all benefit.

(via Kevin Kelly)