In recognition of World Autism Awareness Day, CNN will be focusing on the condition during the day tomorrow, with a worldwide focus. They have had a number of features online and on the network leading up to the extended day of coverage.
A good place to start is this Fortune article on the good work being done regarding the genetics of autism. It is a nice rebuff to the fervor that accompanied the Hannah Poling case.
On the anti-vaccination front, Respectful Insolence has continued its focus on the issue, and the Instapundit has been hounding McCain on his stance, high-lighting the danger of large segments of the population opting-out of vaccinations. In a rare extended Instapundit discussion, Reynolds offers some in-depth back and forth from doctors and other bloggers. I found the discussion of the "free rider" problem especially compelling, And this post (via Instapundit) from Megan McCardle is very well reasoned and well done.
It's a strange turn we have taken on the road against vaccines. I remember growing up and hearing from parents about the miracle of the polio vaccine. The story of science and medicine saving lives. As a bookend, I also recall sitting in on a Rotary Club meeting as a reporter a few years ago and hearing about their efforts toward total eradication of polio worldwide, a worthy effort but also a sign of all the progress that has been made. Now, a generation removed from the ravages of polio suspicion of vaccines has festered and I encounter people who are suspicious of vaccinations and ask me whether I believe it had anything to do with my son's Autism.
I have written previously that this trend toward a complete dissociation with mainstream medicine has it roots within the way medicine is practiced today (here) and past scientific failures (here). The strange thing about this trend is that many of the people who abandon conventional medicine opt for an alternative therapy, diet, or theory that has little or no basis in fact or any science behind at all.
In regards to Autism, I think it is even more curious (or tragic) because thanks to advances in genetics and neuroscience in combination with an influx of funding, we are in the middle of absolute revolution in the our understanding of the condition (for some previous discussion of this science check here). In a few years, I think the causes of autism will be extremely clear and well-understood. I think we may have a genetic test for Autism.
In the future, I am much more concerned with the implications of possibly selecting out embryos that do not have Autism markers. I am not sure that this is as good a thing as it may seem at first glance and I would like to discuss it more here in the future.
Showing posts with label aspergers. Show all posts
Showing posts with label aspergers. Show all posts
The upside of Asperger's
There are many difficult moments when you are a parent of child with Aspergers, but they are also many bright and wonderful moments.
Of course, one of the most well-known aspects of Aspergers and Autism Spectrum Disorders is a need for routine. I know this can become an extremely difficult issue for many parents. For my son, it sometimes become problematic, but there is also something extremely comforting about it too. It is also fascinating to see which things that you do as a family that become a routine which he latches onto.
As I mentioned in a previous post, gastrointestinal problems are a major part of ASD and my son has been no different. It has been an unrelenting problem since he was three. When we were potty-training him, there was one book, Everyone Poops, that we read to him constantly.
It is a charming book. When I worked at Barnes & Nobles, I made it one of my staff recommendations (well before I had any idea that I would ever have children of my own). In one of those moments of divine synchronicity, the book has become a staple of our lives. It has helped him in the difficult time before he was prescribed Miralax.
After having heard the book hundreds of times, he still enjoys hearing it. He has changed much since he was three, but he still has an deep and almost transcendent need for it to be part of his routine.
That's the thing of it, after reading it hundreds of time, I am not bored of it. It is comfort to me.
I could easily go without reading to him, but I am always glad when he asks me or my wife to read it again.
It such a small thing, but in some way it means the world to him. And when you give something very special without having to do much, you can only feel lucky.
Of course, one of the most well-known aspects of Aspergers and Autism Spectrum Disorders is a need for routine. I know this can become an extremely difficult issue for many parents. For my son, it sometimes become problematic, but there is also something extremely comforting about it too. It is also fascinating to see which things that you do as a family that become a routine which he latches onto.
As I mentioned in a previous post, gastrointestinal problems are a major part of ASD and my son has been no different. It has been an unrelenting problem since he was three. When we were potty-training him, there was one book, Everyone Poops, that we read to him constantly.
It is a charming book. When I worked at Barnes & Nobles, I made it one of my staff recommendations (well before I had any idea that I would ever have children of my own). In one of those moments of divine synchronicity, the book has become a staple of our lives. It has helped him in the difficult time before he was prescribed Miralax.
After having heard the book hundreds of times, he still enjoys hearing it. He has changed much since he was three, but he still has an deep and almost transcendent need for it to be part of his routine.
That's the thing of it, after reading it hundreds of time, I am not bored of it. It is comfort to me.
I could easily go without reading to him, but I am always glad when he asks me or my wife to read it again.
It such a small thing, but in some way it means the world to him. And when you give something very special without having to do much, you can only feel lucky.
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.
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.
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:
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
differently.")
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