Tuesday, March 31, 2009

Transparency and healthcare

Over at Brain Blogger there is a good article on Transparency in the Pharmaceutical Industry. According to the article there has been increasing pressure on large pharmaceutical companies to disclose "any payments, gifts, food, trips, samples, rebates, or other type of compensation given to physicians". There are (of course) groups of physicians that are opposed to the idea for a variety of reasons, some good and bad.

I suggest reading the article, it is well written and raises many good points.

I think that increased transparency will only be a good thing. I can understand that some doctors will feel uncomfortable with that level of information becoming public knowledge but the solution would be not to accept the money.

A good model might be the financial disclosure requirements that the talking heads on the cable news channels have. If they are recommending a stock for you to buy they have to disclose if they own it. So in the same token, if a doctor is recommending a drug they should have to disclose if they have a financial relationship with the drug manufacturer.

I would like to think that my doctor is looking out for my best interest and not that of a drug company.

Sunday, March 29, 2009

What a review should look like

In light of my earlier post about how not to analyze a study I thought I make take this opportunity to point out what a good review looks like.

From Autism Research Blog: Translating Autism -

Hyperbaric treatment for children with autism: First controlled clinical trials.

Go read it.

Notice the straight forward discussion of the good points of the study along with the discussion of the problems with the study.

It is clearly a far cry from what what passes for analysis at certain other sites.

Saturday, March 28, 2009

Study Watch : Epidemiology of pervasive developmental disorders.

From the "la-la-la I can't hear you" department comes the latest work from Dr Eric Fombonne:

Epidemiology of pervasive developmental disorders.
There is evidence that the broadening of the concept, the expansion of diagnostic criteria, the development of services, and improved awareness of the condition have played a major role in explaining this increase, although it cannot be ruled out that other factors might have also contributed to that trend.
If we are to believe the work of Dr Fombonne the reason that is seems like autism is increasing is:
  1. The expansion of diagnostic criteria
  2. The development of services
  3. Improved awareness
Otherwise known as the holy trinity of denial.  

So which came first - the expansion of the criteria, development of services or improved awareness?  Or was it a chicken and an egg, I can never remember.

To be fair, the first point above is semi-valid.  The diagnostic criteria for autism did change in 1994 and it did become broader - but not that broad.

The paper is a rehash of earlier studies filled with fancy statistics and analysis designed to make you doubt that the autism is increasing.  So the question that comes to my mind is why does iyt matter if autism is becoming more common?

I think that the real issue here is the underlying theory of what causes autism.  

If autism is not increasing then we can keep looking for the genetic smoking gun that is the culprit and no one can be held accountable.  

If autism is increasing then it cannot be mainly a genetic disorder.  If it is not a genetic disorder then something is "causing" it and people are going to start demanding answers. 

I think many people are afraid of that happening.  

Friday, March 27, 2009

Study Watch : Quick blurb edition

There have been a couple of recent studies that look interesting.  I do not have enough of an understanding of the underlying biology to write intelligently about them but I thought I would point them out anyway.

So, first up the "wow, that's a long title" study:

Cellular and mitochondrial glutathione redox imbalance in lymphoblastoid cells derived from children with autism.
These results suggest that the autism Lymphoblastoid cells exhibit a reduced glutathione reserve capacity in both cytosol and mitochondria that may compromis antioxidant defense and detoxification capacity under prooxidant conditions
Ok, the antioxidant and detoxification processes might be be impaired in autism. 

Next, the "Don't call me a fatty" study:

Plasma fatty acid profiles in autism: A case-control study.
Results showed that docosahexaenoic acid (DHA, 22:6n-3) was significantly decreased in phosphatidylethanolamine. Dimethyl acetals were significantly decreased in phosphatidylethanolamine and phosphatidylcholine as well. These results are consistent with the only other study to measure dimethyl acetals in children with autism, and suggest that the function of peroxisomes and the enzymes of the peroxisome involved with fatty acid metabolism may be affected in autism.
So people with autism may have problems processing fatty acids. I know that isn't a good thing but don't ask me to explain it.

Finally we have the "I have 22 authors, how many do you have" study:
Therefore an immune hypothesis, involving also autoimmunity, is one possible pathogenetic mechanism in autism
There is more of that "mythical" immune system involvement.  I have written about this before. It is a shame that with something as relatively easy to quantify as levels of immune cells that there has not been any wide spread study of this issue.  

Thursday, March 26, 2009

Are you Aware?

Next month is autism awareness month.  If this year is anything like last year there will be slew of news articles and reports about autism and all things related.  And it seems like the horse is out of the barn early this year, if this post on medical news today:
Autism is the fastest-growing developmental disability in the U.S., affecting 1 in 150 children. Every 20 minutes, a child is diagnosed with an autism spectrum disorder. Autism is more common than juvenile diabetes, childhood cancer and AIDS combined.
I have heard that statistic so many times that I forget what it really means.  It is strange that a condition that we didn't have a word for a hundred years ago can be so common now.

How is it that a condition this common and this disabling was overlooked until just the last century?

Must be all of the awareness...

Next month we are going to have a lot of "awareness".

I expect that we will be reminded that autism is genetic and the environment plays no rule.  I am sure that we will also be treated to yet more of the "expert" opinions of people like Dr Offit.  

We will hear from people who think the greatest challenge waiting for children with autism is acceptance from society.

We will also hear from other groups that feel that vaccinations,  rain, lack of Vitamin D, or some other environmental cause is responsible for the rise.  Or possibly something completely different.

We will be reminded that we don't really understand what autism is nor do have any real idea what causes it. 

In short there is going to be no end to what we will hear and who will be lining up to "raise our awareness".

I think the most important thing to be aware of next month is the reason that so many of us are so intense about the subject - 

Someone we care about has had their life changed by autism.

Tuesday, March 24, 2009

When simply ignoring the evidence isn't good enough

Earlier this month there was a study published in BMC Pediatrics called "Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial". This study looked at whether Hyperbaric oxygen therapy (HBOT) can help treat autism.  

The short answer is that it seems possible that it can.

The study is a definite improvement from earlier studies as it a multicenter, randomized, double-blind, placebo controlled trial.  However, it still isn't perfect and there are potential issues.  And most importantly, it needs to be replicated by other groups.

There has been much written about the study itself, so I am not going to go rehash what has been covered elsewhere.  Rather I wanted to write about the reaction to the study, specifically the analysis that appeared on Left Brain Right Brain in the post Autism, HBOT, and the new study by Rossignol et al.

In this post the blogger DoC attempts to argue that the pressure achieved at one of the study locations (Center for Autism Research and Education in Phoenix, Arizona) was not the full 1.3 ATA as was stated in the study but rather might only have been 1.24 ATA.  If you want the full detail about the math go read the original post but the thing that struck me is that when you look at the actual figures used DoC does not have accurate data for his criticism.  Specifically he is missing a key data  point about what the actual air pressure is at the study location.  If his assumed figure was off even 0.6% then his conclusion is incorrect.

I pointed out as much in the comments and he conceded the point while at the same time saying that the study had the same problem. 

Call me silly, but I am thinking that the people at the center in Phoenix would be aware of how to use their equipment properly to achieve the results desired.  And according to the information provided by DoC about the equipment is rated by the manufacturer for the 1.3 ATA quoted.  

But set that aside for a minute and assume that DoC is correct and that the pressure wasn't as high as as reported; that it only got up to 120% instead of 130% of sea level pressure.  What would that mean?  To my mind it would only make the study stronger since the benefits of HBOT were achieved with a lower pressure than was stated.  So if that is the worst problem with the study then that isn't too bad.  

But wait, there's more.  

If you look at the comments you come across some, ahem, interesting additional theories about where the study went wrong.  

Lets start with a comment from "A Proud Father":
I’m sorry, but all you have to do is look at the authors of this study: Rossignol, Neubrander, Mumper. Names just loaded with credibility. I’ll read such a study when it comes from respected members of the research community.
Ok, I guess the whole peer-reviewed journal doesn't mean too much when you instantly know that the authors faked the whole study.  Good catch there, good thing you weren't too proud to say anything.

Joseph suggests that:
Does Dr. Rossignol in particular or HBOT proponents in general recommend that children who live at high altitude should move to the coast? That would seem to be a straightforward conclusion of his hypothesis if it is true.
Showing that he is completely missing the point of increased pressure (1 ATA = sea level).  Perhaps it would have been better to suggest that the families go live underwater since that is where you found find pressure greater than that of sea level.  Or maybe they should dig a really big hole in the ground and live in that...

Continuing on Author says that: 
Despite the blinding attempt, it would have been trivial for someone inside the inflated “nylon” chamber to guess wether (sic) it was inflated at 1.03 or 1.3 ATM, by touching the side of the chamber.
I have to wonder if he has ever been inside a chamber and tried the theory out for himself.  I think not.

Joesph jumps back in with :
The statistics of the study also seem unconvincing. There’s only 1 statistically significant between-groups effect among 9 measures taken using ATEC and ABC.
And finally Sullivan jumps in with the knock-out punch:
The diagnostic instruments (if I can call them that) are inadequate for drawing any real conclusions.
So there you have it, the study has been demolished because of a lack of specified data, the authors are crooks, the chamber gave away the the pressure, the statistics were bad, and even if all the rest were fine the diagnostic tests weren't valid.  Therefore there is nothing to the study and no possible improvements from HBOT.

If only the study's authors had not relied on their own professional experience and had asked this group of people they could have been spared the time and effort of actually performing the study.

(In case you couldn't guess, that was sarcasm)

The only point I keep wondering about is why a group of people who claim that they believe in hard cold facts feel the need to pontificate and come up with wild theories in an attempt to discredit a study.  

Sounds to me like they are afraid of something.

Monday, March 23, 2009

Refreshing change at Autism Vox

As I am sure many people know, the Autism Vox blog was shut down earlier this year when Kristina Chew jumped ship to spread the good word of Acceptance at change.org instead.  There was some talk about the blog being taken over by another blogger.

It appears that has now happened and so far the results are better than the original.  The new bloggers, Jeff Stimpson and Jill Cornfield seem to have a more grounded approach to autism than did their predecessor.  When they are discussing their son Alex they seem to be willing to talk about the good and the bad and to acknowledge that raising a child on the spectrum can be a real challenge.

But of course, there are those that seem to be displeased with the direction of the blog.   Most notably those from the neurodiverse "Autism Hub" seem to be less than pleased with the perceived "negativity" of the initial introduction post.  If you look at the comments you find ones like this one from "shell":
Wow, surprised to see something like this on the Hub.
And this one from Clay, a self-described "aspie":
It’s a mistake. It appears that someone with quite a different “take” on autism has taken over Kristina’s old “Autism Vox” blog, and now wants to piss and moan about how tough it is to raise an autistic child, and make themselves out as martyrs.
Of course people on the hub are surprised to see someone actually talking about the fact that autism isn't just about being quirky and socially awkward.  The reality distortion field there does not seem to allow for the fact that autism is not just a "difference" that needs to be "accepted" but rather is a severe disorder that can profoundly impact the families that are effected.

No surprise there.

There was a follow up post about the reaction to the initial post.  It is laugh out loud funny and shows a real sense of humor - something that is absolutely critical to being able to deal with raising a child on the spectrum.

So congratulations to Jeff and Jill on a good start.  The autism world needs more people who are willing to talk publicly about the reality of their lives with the autism - the good and the bad.

Sunday, March 22, 2009

Good summary by Dr Sears

Dr Sears has a good writeup about vaccine safety and a recent US News & World Report article over at his blog for The Vaccine Book.  It is definitely worth reading, so go read it.

Friday, March 20, 2009

Cholesterol and autism

One of the doctors that treat my children who have autism suggested something this week that I had not heard of before.  He suggested that as part of their annual blood work that we should have their cholesterol level checked to ensure that it isn't too low.  So I spend some time looking to see if there was any information available on this subject.

As it turns out there is some small amount of research that shows that there might be a relationship between low cholesterol levels and autism in a subset of the population.

The possible link between low cholesterol seems have be an offshoot of research into Smith-Lemli-Opitz syndrome (SLOS) which is a metabolic disorder which renders the body unable to make enough cholesterol  to support normal growth and development.  This is a relatively rare disorder (1 in 20,000 to 40,000) that is characterized by distinctive facial features, small head size (microcephaly), mental retardation or learning disabilities, and behavioral problems.  It is caused by a mutation in the DHCR7 gene on chromosome 11. 

Recent research into SLOS has found that most children with SLOS also have autism.  Based on this finding researchers from Johns Hopkins and Kennedy Krieger Institute decided to look at the issue of whether cholesterol played any role into autism. 

In the first study they looked at group of 100 subjects and found that while none of them had the specific markers for SLOS, 19 of them had very low levels of cholesterol (lower than 100 mg/dl which is below the 5th percentile of for children above the age of 2).  So there could be a group of people with autism who have problems with producing enough cholesterol.

In the second study they looked at whether cholesterol supplements helped autistic symptoms in individuals with SLOS and found that the supplements did indeed help.  The authors concluded that "cholesterol ought to be considered as a helpful treatment approach while awaiting an improved understanding of cholesterol metabolism and ASD" .

Or to summarize, we don't know what is going on but there might be a subset of the population with autism who have issues with producing enough cholesterol and giving extra cholesterol might help.

So what's the big deal with low cholesterol?  As adults we constantly hear that we have to lower our cholesterol (or at least the bad form of it) and how harmful high cholesterol can be but we never hear anything about having too low cholesterol.

I can't find a clear list of exactly what low cholesterol can cause but from what I can gather cholesterol is needed for normal development, plays a role in the development of cell membranes, and helps to form a protective covering for nerve cells (myelin).  Also, if you look at the symptoms of SLOS you can get an idea of what can go wrong - low muscle tone, malformations of internal organs, poor growth, mental retardation, as well as other problems.

So I am going to go out on a limb here and say that having too low of cholesterol isn't a good thing.

There clearly isn't much information available about this subject and the work that has been done is very preliminary and needs to be verified and replicated.  But as a  starting point it isn't bad and as I have pointed out in the past, when attempting to treat something like autism where the science isn't there yet you have to go with the best information available.

It will be interesting to see if my daughters have a low cholesterol level.  I don't have any real expectation that they will but it is certainly possible.  

If they do then it is something that we would want to address independent of the autism - if it helps the symptoms great, if not it would be a problem that would need to be addressed anyway.  If their level is normal then it is one more thing that we can cross off the list.

Sunday, March 15, 2009

Treating autism is not a science

One of the reoccurring themes in the autism world is that only treatments that have been proven to work should be used.  This is what evidence-based medicine is all about.  In general I think this is a good idea - you want to be confident that what you are doing will actually correct the problem that you are targeting.  The assumption is that most of the medical world operates this way and that autism treatments should too.

Sounds good, right?

According to a recent entry at Brain Blogger entitled How Strong is Your Evidence? this might not be the case :
[A] recent study published in the Journal of the American Medical Association (JAMA) found that, at least with regards to cardiovascular problems, the vast majority of the medical evidence supporting current recommendations is weak. Researchers examined the current recommendations of the American Heart Association and the American College of Cardiology on 22 different cardiovascular topics. They graded the strength of the evidence supporting these recommendations from A to C, with A being the best evidence, and C being very little or weak evidence. Only 12% of the recommendations were in the A category. A staggering 45% earned a C.
So even when treating cardiovascular problems evidenced based is only the goal not the rule.  So what does that mean when it comes to listening to your doctor?
So should you ignore the majority of what your doctor says for lack of strong evidence? Not necessarily. Most doctors are simply working with the best information they have, even if the data supporting it is weak.
Sounds reasonable to me.  In the absence of strong evidence proving that treatments work you go with the best information that you have.  I imagine that it helps if the person interpreting the information has a background in the area.

So what does this mean when it comes to autism treatments?  The evidence is lacking for almost every treatment out there. The only treatment that I am aware of that has any sort strong evidence behind it is ABA.  So what about all of the other alternative treatments?

If you look organizations that attempt to track what treatments are used you will find a wide variety of thing that people will try, everything from vitamins to diet to therapies to drugs.  

So not only is evidence lacking, there is no lack of options.  So what do to.
I think the answer is simple.  You go with the best information that you have.  You start with the treatments with the most evidence and branch out from there.  You keep in mind that not every treatment will help every child and keep going.  If there is something that you want to try but there is no evidence at all that supports it then stay away from it until there is some level of evidence.  If you can find a medical professional who specializes in the field who you can work with so much the better.

Treating autism is not a science as of yet, it is still of an art. 

Saturday, March 14, 2009


Funny comic from xkcd and appropriate for the autism world. It also happens to the be subject of the first post that I wrote:

Correlation doesn't imply causation, but it does waggle its eyebrows suggestively and gesture furtively while mouthing 'look over there'.

It was Deer, in the Times, with the Bad Reporting

Dr Wakefield has finally responded to the allegations made by Brian Deer a month ago in the Times.  According to a report by David Kirby in the Huffington Post, Dr Wakefield has filed a complaint with the UK's Press Complaints Commission (PCC) alleging that :
  1. The claims of altering data are false.
  2. Brian Deer has a conflict of interest in reporting on a case before the GMC since he was the person whose complaint started the case in the first place.
  3. Brian Deer ambushed him with the story, giving him only 24 hours to respond to the allegations in the story before publishing it.
The issues raised by Dr Wakefield in his response raise factual questions that should be easy enough to sort out, if only you have access to the proper data.  So the questions raised should be answerable.  

However, the average person is not going to have access to the proper information to make an informed decision which means that we are going to have to rely on those authorities who have the information to tell us which version is accurate.  

I will be shocked if this actually happens.  What I expect to see happen is either no response from the PCC or a weasel response that doesn't actually address the issues at hand.

In the meantime, I think who you believe comes down to the character of the people involved.  So is Dr Wakefield an unrepentant sinner or a saint?  Is Brian Deer a hard hitting investigative reporter or a self serving glory hound?

I am not sure what to make of Wakefield but given what I have seen of Brian Deer's character, I think someone is going to have to throw him a new bone.

Study watch : Low Zinc / Copper Ratio

In the March 2009 issues of Biomarkers journal :
This study looks at a smallish group of 230 children with autism, pdd-nos, or aspergers and looks at the serum level of zinc and copper. It finds that the mean that the zinc / copper ratio of the group is lower than it should be and suggests that this could be an indicator of " heavy metal, particularly mercury, toxicity in children with ASDs".

I find this study interesting because my twins both show abnormally low levels of zinc and abnormally high levels of copper. When we started down the path of treating autism a little over two years ago we had numerous blood tests done on both to look for a variety of factors. We looked for fragile-x and other known genetic abnormalities, we looked at immune system function, and we looked at levels of nutrients.

The results were interesting to say the least. On the nutrient side one of the things that came up was that both girls had zinc levels that were half of the bottom lower limit of the scale and that both were at the top of the scale for copper.

What that means is that their zinc copper ratio was something like 0.3 which is half of the 0.6 level that is reported in the study. Or in other words, their zinc / copper was badly out of wack.

Since that time we have, under a doctors supervision, been supplementing both girls with zinc in at attempt to bring their zinc / copper levels back up to normal. So far it is getting closer - their zinc levels have doubled so that they are now at the bottom of the scale and their copper levels have fallen. But their ratio is still out of whack.

Friday, March 13, 2009

Trolling against Poling

There is an excellent opinion article in Friday's Atlanta's Journal-Constituion by Dr Jon Poling. Dr Poling, for those of you who were under a rock about a year ago, is the father of Hannah Poling whose vaccine injury case before the Vaccine court was conceded by the government.

In his opinion piece Dr Poling touches on a range of topics from the myth of better diagnosis, to thoughts on investing research dollars, and even takes the time to smack down Dr Paul Offit (always a good time).

Go read the opinion, it is definitely worth it.

This article is being written about in some of the normal places. Harold Doherty at Facing Autism in New Brunswick has an entry here. Age of Autism has the full opinion here.

And then you have the other side of the commentaries, one written by Do'C on Autism Street here and Sullivan on LBRB wrote one here.

The right wing of the autism world doesn't seem to be mounting an effective response this time around. So lets look at what Do'C had to say. His first point is that :
Yep, Hannah Poling’s case was conceded, but contrary to popular internet re-interpretations which claim a court “decision” about autism causation, the case was apparently never actually heard by the court - and no court ruling about whether or not Hannah’s autistic features were caused by vaccination was ever made.
So the point that the it wasn't a decision by a special master of the court but rather by Department of Health and Human Services means that it wasn't the judicial branch of the government but rather the executive that made the "decision" is supposed to be important. Why it matters I couldn't tell you.

Next up, straw land:
Anyone who claims “better diagnosis” is solely responsible for the increase in autism diagnoses over the past couple of decades is pretty likely to be fairly scientifically illiterate. Writing to suggest that this may embody any representative scientific consensus, is nothing more than construction of a giant straw man argument.
So, no one claims that better diagnosis is involved in the increase of autism. Or as Do'C would have you believe, Dr Poling claimed that better diagnosis is "solely" responsible. The only problem is that he never said that. Regardless, lets see if we can find any references to better diagnosis by these "scientific illiterate".

Here is one on msnbc from Feb 12th of this year :
Recent data suggest a 10-fold increase in autism rates over the past decade, although it’s unclear how much of the surge reflects better diagnosis
Here's another from the Washington Post from 2007 :
The cases are rising, experts say, primarily because of better diagnosis and services: Parents and teachers are more attuned to the signs of autism, and doctors are better equipped to spot it than they were two decades ago.
Here is one from Autism Vox, a blog that was written by Kristina Chew before she went on to write at change.org :
But could it be that we are simply diagnosing autism better? That we ourselves have gained greater knowledge and understanding of autism, and are therefore counting cases of autism more and more accurately?
Finally here on page 10 of the decision reached by the vaccine court written by Special Master Hastings (as everyone knows, a real scientific "illiterate"):
Other experts argue that the increase in diagnosis does not represent a real increase in the incidence of the condition, resulting instead from a broadening of the diagnostic criteria for autism, improved recognition of autism, and other factors.
I think it is safe to say that it better diagnosis is commonly used. So survey says - one stack of straw for Do'C.

Next up Do'C take issues with Dr Poling's claim of "drowning in the red ink of educating increasing numbers of special-needs students" by showing a graph of the percentage of children served in California under IDEA vs the residential population over the past 10 years. This graph is a straight line implying that there has been a) no rise in the number of special needs students, and b) no rise in cost.

The problem is that the if a percentage is flat but the underlying population is growing then the actual number of students would be increasing. The other problem is that his chart has no information whatsoever about the costs incurred by the school districts while educating these children.

Lets not even talk about the fact that just because California has one pattern that not all other school districts in the country are the same. And lets certainly not discuss the differences in cost between providing relatively simple services such as speech therapy and the very costly proposition of providing a one-on-one aid for a child on the spectrum or a special purpose classroom.

None of that is apparently relevant. Just keep your eye on the nice flat line.

That's the end of my attention span for Do'C. So lets turn to what Sullivan has to say.

His main beef seems to be that:
why is it that people who claim to support “gene-environment” interactions seem to have disdain for the “gene” part? How are we supposed to separate the various autism subgroups without identifying the genes? And, if we identify genes, won’t their function give us some idea of what environmental causes might be worth studying?
For which he gets the "YOU'VE MISSED THE POINT" award of the year. The point that Dr Poling was making is that continuing to pour more research dollars into a fruitless search for a gene or genes that could be contributing autism is doing nothing to help create early interventions that could help prevent autism. His point was that if we can identify the environmental trigger you could change the course of the disorder.

There have been countless genetic searches done for the "smoking gun" gene that "causes" autism. It has yet to be found, most likely because it as a singular entity does not exist.

So instead of continuing to dig in the same haystack for that one piece of hay that might not even exist it might be time to consider switching to more other neglected areas that have more potential to show results.

I will skip Sullivan rehashing Do'Cs arguments - regurgitated straw doesn't taste good.

Sullivan's final point is that the entire reason for Dr Poling's piece is that this "is rather poorly disguised attempt to air his ongoing battle with Dr. Paul Offit." I think Sullivan has a point here, after a fashion.

There is clearly a disagreement between Dr Poling and Dr Offit. These two have been having a back and forth over these issues for a while in a variety of places, from journals to newspapers.

On one side you have have Dr Offit who represents everything that is wrong about the modern medical industry. He is an insider who has had large vested financial interests in one side of the argument winning. Autism is not his field, he just comments on it as a hobby.

On the other side you have Dr Poling who is the father of a child whose autism was caused by vaccinations. Dr Poling has done research with other scientists to try to determine how his daughter developed autism - and he found the answer. He helped to document how his daughter's autism was caused.

Dr Offit has repeatedly attacked him and the acknowledged fact that his daughters autism was caused by vaccinations. This is despite the fact that Dr Offit had no special knowledge of Hannah Poling's case or medical history. From all appearances he did it solely to protect his vested interest in the vaccine industry.

So whose side are you going to take? An industry-made millionaire or the father fighting for his child with autism?

It isn't a tough choice.

Flu Time

I have been quieter for the past week or so because it has been family fun with with the flu.  It started last Tuesday with twin A coming down with a fever.  Thursday night it was Twin B's turn to start.  On Sunday I got it and on Wed my wife finally caught it.  The last one standing so far is my youngest daughter but it looks like she is getting it today.

If you ever want to have a good time try twins who are both sick and have autism.  They are normally very good natured and happy little girls but when they don't feel well watch out.

There would be those who would say that there is a shot to help prevent this sort of thing.  They would be right, there is a shot.  And that is what I wanted to write about.

So let me start back when my twins were not yet one year old.  They were developing normally - there were few signs of the disorder that they would go onto develop (although to be fair there were some things).    

I very clearly remember how one time they both crawled over to a piece of furniture that was blocking their access to something.  They both went to the same side, stood up, looked at each other, and together pushed it out of the way.  A good example of what twins can do when they put their minds to it.

Shortly after this episode at a pediatricians visit the doctor brought up the subject of a flu vaccine.  Being new parents who wanted to do everything to protect our children from any sort of illness we agreed.  The shot was administered without any problems and we brought them home.  Shortly afterwards they both developed a fever and came down with what was likely the flu.

That sickness lasted a little over a month until just past their first birthday.  At the tail end of this sickness they received the MMR as part of another routine vaccination.  They have never been the same since. 

Going into this month they were happy little girls who looked  when you called their names, who made good eye contact, and who occasionally worked together.   

By the end of the they were still happy but now withdrawn little girls who would no longer look when you called their names, who would no longer look at you, and who for the next 10 months we thought were deaf.  

This was the when we believe that they regressed into autism.

Let me be clear.  I don't think that the shots "caused" their autism.  But I do think they they might have provided the proverbial straw that broke the camels back.  Maybe it was getting sick at a crucial point in time or being exposed to something like the shots that caused more stress than their bodies could deal with.  I don't really know and I am not sure it is possible to know.

One thing is very clear to me though.  Comparing how they were this week with the actual flu versus how they were over three years ago in the wake of the flu shot - I would take what they had this week over that any day of the week.

At any rate we are all starting to feel better  so the jabberwocky will resume shortly.

Wednesday, March 11, 2009

Pediatrics About.Com blog recommends Neurodiversity

Over at the Pediatrics blog at about.com we have a (cough, cough) review of Dr. Offit's "Autism's False Prophets" written by Dr Vincent Iannelli.  Well, review is too strong of a word, here is the review:
It is a must read for any parent who has questioned their decision about vaccinating their child, is delaying getting vaccines because of worries about reports of links between vaccines and autism, and blah blah blah......
Maybe calling at press release would be a better idea.

I have seen many of these style of "reviews" before, so this is nothing new.  What is new is buried in a comment by the good doctor:
This is not to say that some of these treatments might not help some children, but just that the book offers an alternative view about those treatments and introduces parents to websites like neurodiversity.com and Autism Diva.
In his comment he actually provides links to both sites.  Go read the rest of the comment to get the full context.  

I have never seen a pediatrician who actually recommends that parents read about the preachings of a group of people who think autism is just a difference and not a disorder.

Friday, March 6, 2009

Neurodiversity: An ounce of prevention is not welcome

I think that most rational people would agree that having autism is not desirable.  Most people would agree that if something like autism could be cured or prevented it would be a good thing.

These people would not be ones that believe in neurodiversity.  There is a strong anti-cure theme in their preachings.  Take for example two recent posts, one from Michelle Dawson who writes at The Autism Crisis and one from Kev at Left Brian Right Brain.

First up is a quote from Ms Dawsons post Smallpox, polio, and autism :
So parliament's power will be used to spread awareness--to inform schools, families, employers, communities, landlords, governments, and so on--that autism is as frightening and harmful, as dangerous to society and the public good, as smallpox and polio. And just like smallpox and polio, autism must be eliminated--regardless of science and ethics, regardless of the wishes of autistics and/or parents of autistics.
I don't know why "science" has a problem with that and I think ethics is a city in ancient Greece.   I am going to go out on a limb here and say that most parents of children with autism would gladly agree to it being eliminated.  And while we are visiting that ancient Greek city of ethics I wonder what they would say about an "autistic" in effect wishing autism on other people by opposing its elimination.    

I think what she is really saying is that she has a problem with eliminating autism.  

Next up is the fascinating IACC Strategic Plan: Good for us?  In this post Kev, who lives in the UK, is talking about what in the strategic plan of the IACC, which is a part of the US government.  I am not sure why he feels the need to comment on a plan that he isn't part of.  Doesn't the UK have similar measures that he should be more concerned with?

Regardless, he seems to be having issues similar to Ms Dawson: 
I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.
(Ah yes, the august Simon Baron-Cohen, I wonder what his ideal WHR is.)  
There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.
So just another prevention and cure is bad riff with an added autism-isn't-a-medical-condition zinger thrown in for good measure.  But other than the august WHR he doesn't really give a reason for the prevention of autism would be a bad thing.  For that we have to turn to a comment on his post by Joseph :
Preventing autism is something that people outside of the autism communities see as a positive. It does nothing for those of us in the autism communities. I’m sure even the anti-vaxers don’t care a whole lot about prevention. For those of us in the autistic community it’s even somewhat offensive.
Of course no one would oppose prevention of viral-cased or chemically-caused brain damage with a phenotype that presents as autism, as RAJ’s strawman attempts to suggest. I am, however, completely opposed to any type of “prevention” that involves genetic screening and abortion.
Now we get getting closer to the heart of the matter.  The ND believe that autism is primarily genetic therefore to them prevention becomes "genetic screening and abortion."

Notice how Joseph excludes what he calls conditions that "present as autism".  As  I have written about before, autism is not defined as a cause but as behaviors.   If you meet the criteria then you have autism.  So this sort of distinction is rather does not exist.

It is a shame they are so locked into their views that they feel the need to take a stand against something like preventing autism.  I guess once you go far enough down a certain road you become more concerned about keeping your world view consistent than doing what would be right.  

Study What ?!?!?

From the you-have-to-be-kidding-me department comes this "interesting" study from the University of Bath in the U.K. :

According the the authors of the study apparently fathers of children with autism show a preference for women who have a larger waist-hip ratio.  A larger WHR is thought to imply a higher level of testosterone in women.  This ties back into the extreme male brain theory of autism that has been put forth by Simon Baron-Cohen.  So the idea is that men who are likely to father children with autism are more attracted to women who have higher levels of testosterone (and quite possibly beards).

I am not sure what to be more surprised about - the fact that someone took the time to study this or that someone was willing to pay for the study to be done.  

If the theory that you are testing is that parents of children with autism and the children themselves have higher than normal levels of testosterone, why wouldn't you just measure the level directly?  Wouldn't that give you a better set of data to base your conclusions on?

I think the purpose of this study was an excuse for a bunch of men to sit around and stare at pictures of women.

Wednesday, March 4, 2009

Product Liability

The Supreme Court ruled today on a product liability case that was before it.   The case was Wyeth v. Levine and the court ruled in favor of Levine and against Wyeth.  The issue before the court was whether federal law preempts relevant state law, specifically whether a Vermont state failure-to-warn law was preempted by the FDA approving the label for a drug.  In this case the label for the drug failed to link a method of delivery of the drug to a potentially serious side effect.  The Supreme Court ruled that the FDA approving the label did not shield the company from liability from a state law. 

I am oversimplifying the case.  There is a good write up of the decision on ScotusBlog here and here.

What I found interesting here was some of the comments by Justice Stevens in his opinion (via ScotusBlog) :
Justice Stevens had fervent praise for the function that patients’ lawsuits — based on state, not federal, law — may serve. “State tort suits,” he wrote, “uncover unknown drug hazards and provide incentives for drug manufacturers to disclose safety risks promptly. They also serve a distinct compensatory function that may motivate injured persons to come forward with information.”
When those lawsuits are based on claims (as in the Wyeth case) of manufacturers’ failure to warn about risks, Stevens added, they “lend force to the promise [of federal law] that manufacturers, not the FDA, bear primary responsibility for their drug labeling at all times.”
So apparently Justice Stevens feels that lawsuits are a valid mechanism to keep companies honest and that the manufacturers, not an agency of the government, should be responsibility for the safety and warnings attached to their products.

Let's compare and contrast against the the legal rights of someone who feels that they have been injured by a vaccine.  In these instances the case has to be brought before what is commonly called Vaccine Court where different rules and procedures apply.  

In this court it is not the manufacturer that bears the responsibility to defend their product, it is the federal government.  In this court it is not the manufacturer that bears responsibility for damages caused by their products, rather it is the consumers who use the product that pay the damages (by means of a surcharge on the product).

The system may have been needed when it was created but it is possible that it has outlived its purpose now.  Especially considering the fact that the vaccines are increasingly becoming big business for the companies that make them - a recent Wall Street Journal article puts the size at 21.5 billion dollars 

Anyone see a problem and potential for abuse here?  

Tuesday, March 3, 2009

Study Watch : Association of MET in familes with Co-occuring Autism and Gastrointestinal Conditions

The March 2009 issue of Pediatrics includes a study that demonstrates a relationship between disrupted MET signaling, Autism, and gastrointestinal dysfunction:

Distinct Genetic Risk Based on Association of MET in Families With Co-occurring Autism and Gastrointestinal Conditions

The study looked at a group of 214 families containing 918 individuals from the Autism Genetics Resource Exchange (AGRE) data set in which there was DNA samples as well as gastrointestinal information available.

The authors looked at the relationship between a disruption MET signaling and co-morbid autism and GI symptoms.  What they found was that in the 28% of the individuals (275) that had both autism and GI symptoms there existed a "functional variant in the 5' promoter of the gene encoding the MET receptor typosine kinase."  Got all that?  Basically I think this means that there is a variation in part of the pathway that controls the MET signaling process and as a result there is a decrease in this MET process.

This variation is relatively common in the general population but in study it was associated (related) in the subset of individuals that had both GI issues and autism but not in the subset that only had autism.  

So the group that has both GI issues and autism tended to have this variation but the group that had autism without GI issues did not.

This MET signaling has a role in neural development and function, immune function, and gastrointestinal systems.  Does this list sounds familiar?

The authors are quick to point out in the discussion section that this is only an exploratory study and that more research is needed to verify that there really is a relationship here.  They also point out that this study is small for the type of study that it is and that it is only as good as the results from AGRE that it is based on.

So what does this mean?  

I am not completely sure of all of the nuances of what I am reading.  I believe that it is talking about a disruption of a normal process that is happening because something is interfering with the normal function of a gene - in other words it isn't necessarily a "genetic" mutation in the common usage of the word but rather a mutation in something else (epigenetic change?) that is controlling (regulating) the gene that can be passed form generation to generation.  This variation can cause issues that might result in both autism and GI problems.