Don't lick the kids

From xkcd.com comes this  slightly off color take on the swine flu with an autism twist.  

Pssst - she doesn't like being called a "crusader"

There was an article that was published Monday on Salon by Elizabeth Svoboda that deals with neurodiverity.  All in all if was mostly balanced account presenting an accurate view of what the some of the debates  and issue surrounding this concept are about.  I think it was a little too kind to the neurodiverse side but I don't think that will come as a surprise to anyone who has read some of my prior posts.

The article is well enough written that I can't really add anything to it - not unless I wanted to highlight how poor my writing skills are in comparison.

Definitely worth reading so go read it.

If you paid attention while you were reading you came across the name Michelle Dawson.  You may have missed it if you blinked, so here is the part that refers to her -

If autistic-rights advocates win their court battles, many treatment programs could stop receiving government money. In 2004, for instance, autistic-rights crusader Michelle Dawson convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy.

There is approximately one line in there that references her directly - a little over 20 words.  

Ms Dawson apparently found this statement to be offensive and written a rebuttal letter that is posted on her blog.  To rebut 20 words she has written, well I stopped counting after the first page.

She starts with a "falsely characterized" followed by a "I was never interviewed' and "I am not a crusader".  She goes on to review what she feels her role in the Canadian court case was and to reiterate that she is not part of neurodiversity or any other movement - she is apparently a movement all of her own.  She then goes on to describe her moment in three simple points - those point are a topic for another day.

In closing she ends with -

The standards currently applied to autistics are such that you are free to misrepresent me, and major legal decisions and issues, and so on, all you want. There's nothing I can do except put accurate information on the record, again, even though it has been here all along, for anyone who takes autism seriously.

I am not sure what autism has to do with the feeling that a journalist has misrepresented you - I thought that could  pretty much happen to everyone.  I am also not sure why she felt the need to write a lengthy letter over one sentence.  

Perhaps she was feeling left out of the debate since she views herself as a side of her own.  But since the article was about neurodiversity, a movement she proclaimers herself to not be part of, I don't see what the problem is.  

I was not interviewed for the article nor was I quoted (not that I have any reason to think I should have been or anything to add to the discussion) so should I be upset about that? 

I think the real problem here is that Ms Dawson really, really doesn't like to be called a crusader and tends to overreact when that word is used.

 

The truth can do that to a person.

Don't look a gift horse in the mouth

There is a limited amount of government funding that is available for autism services and Kristina Chew takes issue with how Pennsylvania spends its limited resources in a recent post at autism.change.org.

Her concern is that PA allocates 185 million to providing medical assistance programs for children with autism yet has just started allocating only an addition 20 million for respite care and therapies for people older than 21.  Prior to this there was no funding for services after 21 so this is 20 million is additional funding.

The medical assistance program in PA provides for all medical needs for children with autism, from ABA style therapies to speech therapies to basic medical care.  

Ms Chew's beef with the new program is that the funding isn't even between the two areas -

Something of an imbalance? Especially in light of the reality that (like all of us......) individuals on the autism spectrum are going to be adults for far longer than they are children.

And that too much emphasis is put on trying to give children the best head start possible - 

Has parents' fear of their children growing up and becoming adults with autism focused attention too much on doing "everything one can" to "remediate" autism in a child, rather than on thinking about the life-long needs of a child?

What Ms Chew seems to forget, rather conveniently, is that the reason that all of the early intervention is done is because we are thinking about the life-long needs of a child.  

Not too long ago the answer to an autism diagnosis was to give up hope and put the child into an institution where they would likely spend the rest of their life.

Now we try to prevent that and give the children with autism the best help that we can so that they have a chance of overcoming their disability.   Right now early intervention is the only evidence based, medically accepted treatment for autism and the earlier that you start the better then outcome for the child.  In some cases you are able to teach children to cope with their disability well enough that they can hope to have a "normal" life.

In the case of my children early intervention has taught them h0w to communicate using sign language, PECS, and the beginnings of how to talk.  It has also taught them how to tune into the world around them so they can hope to understand it.  I am hopeful that given the right supports that they will be able to overcome their disability.

That is why early intervention exists and that is why the funding is set up the way that it is.  The earlier you start the less likely that services will be needed for the rest of the child's life.  And if there still is a need for services it is likely that not as much will be needed.

Ms Chew is a bit hypocritical in talking about rebalancing funding since she took advantage of it when her son was younger  - 

I'm not critiquing "early intervention"; certainly my own son benefited hugely from the teaching and care he received from the time he was 2 years old. But I hope we can find ways to think of autism as not simply, not only an "issue of children's health" but as why we need to allocate resources for individuals of autism of all ages, all through their lives.

I am guessing that what she is saying is that while she isn't against early intervention she would rather cut back on the money that PA spends on that service and reallocate it for adult services. 

So we should cut 85 million from the medical assistance program - cut the services provided to every child in the state - drop ABA hours, drop speech therapy, drop medical coverage and  reallocate it to the older individuals with autism? 

How many adults are there in PA over 21 that have a diagnosis of autism compared to the number under 21?  Do we think these numbers are even close?

Maybe instead of complaining about the imbalance in funding amount perhaps she should be talking about what a good first step this is in providing needed services for adults?  

The Autism "Science" Foundation

There is a new wanna-be non-profit forming called The Autism Science Foundation whose stated goals are :

1. Autism is known to have a strong genetic component. Research must aim to discover the mechanisms of action that trigger autism, as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.
   


2. Early diagnosis and early intervention are critical to helping people with autism reach their potential, but educational, vocational and support services must be applied across the lifespan. Science has a critical role to play in creating evidence-based, effective lifespan interventions.
   


3. Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.
   

Sounds good right?  Uhm, maybe not so good.  Lets take a closer look at those goals again - 

1. Autism is known to have a strong genetic component

I think this is a safe enough statement

Research must aim to discover the mechanisms of action that trigger autism,

So autism is a genetic disposition that has some sort of "trigger" that causes it to occur.  So far so good, nothing out of the ordinary.

as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.

This is an interesting phrasing.  You have a condition that has triggers that you are attempting to identify - if you succeed in identifying the triggers then why focus on treatments that "enhance the quality of life", why not focus on preventing the condition from being triggered in the first place?

The use of the words "safe" and "effective" is also an interesting choice.  It almost sounds like they are describing a drug based treatments ... oh uh.

2. Early diagnosis and early intervention are critical to helping people with autism reach their potential

This goal starts off well enough.  Early intervention is thought to be key to helping people with autism overcome their disability.

but 

As my parents were always fond of pointing out when you use the word "but" you are essentially negating what came before.  So early intervention would be key except but...

educational, vocational and support services must be applied across the lifespan. 

Ah, early intervention is important but services must be there for the entire life.  Or in other words, we are going to focus on treatments for adults on the spectrum.  Sounds like a good idea, there are going to be a huge number of adults on the spectrum in the coming decades and there need to be services to help them since it is likely that the majority will not be able to live independently.

Science has a critical role to play in creating evidence-based, effective lifespan interventions.

I have never heard of scientific, evidence-based educational, vocational, or support services.  Do you think they are going to conduct studies to "prove" which vocational trades are most suited for people with autism?  Or do you think they are talking about developing drugs again?  I'm thinking drugs.

3. Vaccines save lives; they do not cause autism.

Yikes - a "science" foundation making a unequivocal statement of fact. They are in essence saying that all possible avenues of thought have been explored and Science has decreed that there is no possible relationship and that vaccines cannot, under any circumstances cause autism.  I have to wonder how they know this.

 Numerous studies have failed to show a causal link between vaccines and autism. 

Now I feel much better.  They have numerous studies that failed to show a link.  And, as everyone who has taken the basic science knows, having "numerous failures" to show a link clearly means that the link isn't there.  It couldn't be possible that it was just the wrong question being asked. 

Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program,

So vaccine safety research should continue to be left up to the companies that are developing the vaccines and marketing them in a liability free market place.  No possibility of problems there.

I also have to wonder at including maintaining confidence as a goal of safety research.  I would think that the goal of safety research is to make sure that they are safe not to make people feel better about them

but

There is that word again. 

further investment of limited autism research dollars is not warranted at this time.

Safety research is important but we won't be doing it - which does make a certain amount of sense since they have already decreed that there is no possibility of any sort of relationship.

So, what is the the goal of this new group?  Simple, to help develop drug based treatments for the up and coming adult autism population.  It is a good thing that someone started doing the research to serve this market, after all, with 1 in 150 children being on the spectrum the potential market is going to be huge. 

There is more to this story than just the mission of the organization.  The founders of the group are an interesting lot and, like normal, the reaction on other blogs is fascinating.  But this post is already on the long side, so that will have to wait for later.

The CDC needs to get the lead out

The CDC needs to do learn to do their job better, at least according to story that appeared on salon.com earlier this month entitled "Health agency covered up lead harm". The controversy this time has to do with how the CDC investigated and reported on the high lead levels that were found in the water supply of Washington D.C.

In March of 2003 the DC Water and Sewer Authority expanded some of the required lead-in-water testing to homes with lead service pipes that had not been tested before. What they found was that the majority of these tests turned up lead levels that exceeded the EPA's limit of 15 parts per billion (ppb) and in some small number (~3%) of cases the lead concentrations were greater than 300 ppb. So the Water Authority turned to the CDC for assistance.

The CDC studies the problem and releases a report that basically says that there is no problem. The lead in the water might have contributed to a small increase of blood lead levels but the levels seen wouldn't be a problem.

The CDC publishes the results of the report and closes the case. The results of this study are used by other municipalities to justify not responding aggressively to high lead levels in their water.

But of course, there wouldn't be a problem here if that was all there was to the story. Anyone familiar with the autism world should be able to see what comes next.

It appears that the report that the CDC issued had some problems.

First, a large chunk of data from the final study year (2003) was silently dropped from the report. And while the CDC acknowledges that the data is missing they still stand by the conclusions of the study because the large amount of missing data would not have changed the results.

Second, and more importantly, it seems to be that the conclusions of the study were wrong. Outside researchers kept looking at the problem after the initial report and found evidence that contradicted the CDC's finding.

This scrutiny prompted the CDC to take another look at the issue and by 2007 the CDC had completed another study. This new study looked specifically at the blood level of children in Washington D.C. who were exposed to lead from lead service pipes. What was found was a strong relationship between children with lead poisoning ( blood lead level > 10 ug/dL) and living in homes that had lead service pipes.

Or in other words the first report was wrong and the level of lead in the water supply was giving children lead poison

Being a responsible government agency you would think that they would make a big deal about the new findings and get the word out that there was a problem with the earlier results. You would think that they would take aggressive steps to address the problem.

You would be wrong. The CDC basically buried the results of the second study -

CDC scientists and press representatives did not respond to requests for an explanation about why the results were not widely publicized. George Hawkins, director of the District Department of the Environment, in Washington, says he became aware of the 2007 study only on April 2 this year, when Salon showed him an abstract of the study. Scientists from other agencies, including EPA and HUD, also say they were never told about the results. "CDC never told us," says an EPA scientist, "and they never asked our help or any other water expert's help when they did their studies..."

This is the same government agency that plays a leading role in the the autism world. I can only hope that they do a better job in that field.

Public Disservice Annoucement

I take a break from paying attention to the autism world to catch up on some needed sleep and to spend more time with the children and wouldn't you know it, I miss something like this video -

"No Myths" Public Service Announcement

Of course this was covered by the usual cheerleaders such as Steve D at "One Dad's Opinion" who thinks this is a good example of positive awareness. Then there is the usual neutral appearing yet highly slanted coverage at change.org. And of course the "Powerful Autism public service announcement" post at Left Brain Right Brian.

The list goes on and on but I think you get the idea. It might be simpler for the ND folk to put out a press release and be done with it.

There has not been much coverage of this by the "other" side. Harold Doherty had a quick mention of if but he is really just pointing out a post by Jonathan Mitchell at Autism's Gadfly debunking the video.

I can't speak to the specifics of the people involved the way that Jonathan did but I but I think that parents with children on the spectrum should watch the video and ask themselves a simple question.

Do the people in this video act or carry themselves like your children?

For me the answer is no. My daughters look like and act much more like Hannah Poling did in some of her public appearances.

I know it would the happiest day of my life if my daughters will be able to express themselves as well as the young boy when they are that age. At this point I would be happy if they could express themselves using more than one word at a time. They are making what is for them is rapid progress but they still have a very long way to go. And my children are on the less severe end of the spectrum.

So the question that comes to my mind is do these people fairly represent the needs and requirements of children on the spectrum?

When people like Ari Nee'man speak out against a cure for autism and say that I should not try to "cure" my children's autism. What gives him the right to make such a decision for my children?

When someone like Michelle Dawson attempts to convince parents not to treat their children with medically accepted and recommended treatments whose benefit is that for?

When Deena Gassner says in the video "Autism is an integral part of who I am and how I see the world. I've embraced it and it has made be stronger" who is she trying to kid? I would challenge her to point to the exact part of the DSM IV autism criteria that when "embraced" makes you stronger. Do you think it is the disrupted communication or social skills? Perhaps it is the stims or restricted or obsessive behaviors?

Oh wait, I know, it is the ability to have a complete and utter meltdown in public because you can't pick a flower - that makes your "stronger", by strengthening your vocal cords. (Twin B has a bad habit of doing this)

Give me a break. If you think autism makes you stronger then what you have isn't autism.

The title of the video is "No Myths" yet I think a better title would have been "Our Myths". These people would have you believe that autism is just a "difference" something that you can live with and work around, with the right supports. They may even be right, for a very small subset of people on spectrum who are able to work around the disorder and thrive in spite of it.

But for the rest of the adults with autism and for the vast majority of children on the spectrum what they are doing is a public disservice. They are attempting to create a false impression that autism is just a quirk and not the profound disorder that it is.

So let me offer my two cents worth of advice to the people in the video. You want a larger part in the "national discussion of autism" that is happening "without you" then you need to stop being part of the problem. Get down off of your ideological horse and start being part of the solution.

Study Watch : The Efficacy of Melatonin for Sleep Problems in Children

Sleep.  This can sometimes be a foreign concept to children on the spectrum and well as their parents. We have been having some issues with sleep for the past few weeks so the topic is very much on my mind.

One of the things that we use to help our children sleep is melatonin.

Melatonin is a naturally occurring hormone that serves many purposes in the body, one of which is helping you fall asleep.  It is relatively safe to use in children and has very few (if any) side effects.  However, while it is available over the counter as a supplement, I would suggest talking to a medical professional before giving it to your children.  That is just common sense for anything like this that you give to your children - especially the ones who can't communicate well.

With that in mind I wanted to point out some new research that appeared in the April 15th issue of the Journal of Clinical Sleep Medicine  - 

The Efficacy of Melatonin for Sleep Problems in Children with Autism, Fragile X Syndrome, or Autism and Fragile X Syndrome

I think this is one the first double-blind placebo controlled studies that I have seen that looks specifically at the question of how effective melatonin is in helping children with autism sleep better.  The study was on the smaller side with only 12 of 18 subjects completing the study as well as being on the shorter side being only 4 weeks long.  Each of the participants took either melatonin or a placebo for two weeks and then switched to the the other group.

The authors found that the group taking melatonin feel asleep faster and stayed asleep longer than the group taking a placebo.

I have not read the full study so I can't comment about why 6 children dropped out or if there were other problems with the study but I don't think the findings are all that surprising.  I believe the practice of giving melatonin to children with autism to help them sleep better is fairly widespread.  

The only point of contention that I have seen is how much you should be giving.   In this study the dose was 3 mg but I have read other places of the range being from 1 mg up to 6 mg.  We give our daughters 0.25 mg on nights they are having trouble falling asleep and that works for them.  

Study Watch: Omega-3 Fatty Acids for Autistic Spectrum Disorder

In the Journal of Autism and Development Disorders on March 31st is a study having to do with omega-3 fatty acids and autism -  

Omega-3 Fatty Acids for Autistic Spectrum Disorder: A Systematic Review

This is an open access study so the text of the study is available for you to read.

The authors of this study conducted a systematic review that looked into the question of how safe and effective Omega-3 fatty acids are for treating autism.  This is one of the most commonly used alternative therapies used for children with autism (28.7% of children).

The mechanism of how Omega-3 fatty acids would improve the symptoms of autism is unknown but it is thought that  some of the fatty acids (DHA) are essential to the growth and development of the human brain.  They are also known to have an anti-inflammatory effect.

There have been some some studies that have reported a low level of Omega-3 fatty acids in children with autism when compared to controls as well as other studies that have reported deficiencies in individuals with other psychiatric disorders such as schizophrenia and ADHD.

The authors' review found a total of 143 potential articles of which 6 were considered robust enough to be included in the analysis. 

Of these four were open-label studies that showed some potential benefits but all suffered from missing data, methodological flaws, or other problems that rendered them of little use.

One of the articles was a case report of an 11 year old child with autism whose anxiety and agitation were successfully treated with omega-3 supplements.  However, case reports being what they are, this article provides little information.

The final study was a randomized controlled trial of 13 children with autism.  This study showed some improvements between the treatment and control groups but none of the improvements were statistically significant.

The authors concluded that while Omega-3 fatty acids are relatively safe there is insufficient evidence to say whether they are beneficial in the treatment of autism - but since this is such a commonly used therapy there needs to be more research done in this area.

I would like to point out two very good sections in Appendix 2 of the study that attempts to answer the following questions concerning alternative (CAM) therapies for autism:

How do I decide whether to try a CAM therapy for my child who has an ASD?

How do I evaluate the scientific evidence of CAM therapies?

Since this is an open access study you can go read the sections for yourself - they start on page 8 are are worth the time to read.  However I am going to copy the last paragraph from the second question because I think it is a very important point that tends to get lost in all of the discussions out there:

For the vast majority of CAM therapies for ASD, there is little or no evidence to document efficacy. However, the lack of evidence should not be equated with a conclusion that a therapy is ineffective. In the absence of scientific evidence, there is an equal chance that any therapy will be beneficial or harmful.

I couldn't have said it better.

Companies behaving badly

In the news from down under comes this story of Merck behaving badly. The headline for the stories sums up the allegation quite nicely -

Vioxx maker Merck and Co drew up a doctor 'hit list'

According to the articles staff of Merck compiled a 'hist list' of doctors who had to be "neutralized" or "discredited" because they had been openly critical of Vioxx or Merck.

The articles also include an allegation that "the company used intimidation tactics against critical researchers, including dropping hints it would stop funding to institutions and claims it interfered with academic appointments."

The source of the information is a Merck internal e-mail which came out in the Federal Court in Melbourne as part of a class action suit against the company.

The e-mail included this passage that was apparently written by a Merck employee -

"We may need to seek them out and destroy them where they live"

Its good that this employee responds well to constructive criticism.  

So you may be wondering what this has to do with autism.  It has to do with the motive of companies whose products have been implicated as having a relationship with autism.

I think this is a good example of what a company will do to protect its products. If there are people who are pointing out problems with a products the first response is going to be attempt to discredit the critics. It is only when presented with overwhelming evidence or when government regulatory agencies get involved or when lawsuits start flying that companies will change their tune.

So lets consider some numbers from Merck's 10-K SEC filings.

In 2003 worldwide sales of Vioxx were 2.5 billion. This was the year before sales were halted due to health concerns.

In 2008 sales of Merck vaccines were approximately 6.4 billion.

Given what Merck is alleged to have to done to protect 2.5 billion in sales, what do you think they would be willing to do protect 6.5 billion?

Discredit HBOT, Take III

The nice people over at Right Brain Left Brain are at it again with yet another post about why the recent study on HBOT is all wrong.  The title of this one is :

More Hot Air about HBOT

I couldn't have put it better myself.  

This time they appear to have handed the torch, so to speak, to Prometheus who normally writes on his own blog.  I have to say, this post is better written that the earlier ones but still falls short of the mark.

I think it is worth reiterating at this point what I have said before about this study.  It is a step in the right direction but the results are still preliminary and need to be verified by further studies.

So with that in mind lets look at what the "problems" are this time:

The six centers that were involved in the study are small locations with primarily one doctor and make money from selling HBOT services.

Well, this one is true at least on its face.  The centers in the study are smaller locations that have HBOT equipment available (and it isn't cheap) - so surprise, surprise, they actually use it.

It would have been better if the centers involved in the study were all part of a large organization that happened to have HBOT equipment on hand and was willing to conduct a study with it.  However, this is an experimental treatment for autism - until there is a good amount of evidence that this is going to work then I don't think it is likely that large organizations are going to get involved.

Given that larger organizations aren't going to be involved (yet), that leaves smaller groups.  So with that in mind if you are looking for smaller groups with HBOT equipment they are likely to have it because maybe they use it as part of their business?  

Therefore it is not surprising that small centers would sell services using the equipment that they have purchased.

As to the one doctor point, look at the small centers in your area like MRI clinics.  How many doctors are on staff at those places?  A quick check around my area showed that one or two is normal.

[T]he decision to include one treatment subject who only completed nine sessions was curious. Why they included this subject and not any of the other three treatment subjects and three control subjects who also failed to complete the entire course of the study is concerning. The smart thing – and the proper response – would have been to drop this subject from analysis.

To answer this problem I think we should look at the participants that dropped out to see if the reason become apparent. Since the full text of the study is available I think that would be a good place to refer to:

In the treatment group, two children dropped out of the study prior to beginning any treatments due to an illness (one with otitis media, the other with bronchitis). Another child dropped out before finishing one full treatment due to anxiety in both the child and the parent.

So in the treatment group the three that dropped out did not complete any treatments. 

In the control group, two children dropped out of the study prior to beginning any treatments (one because of a death in the family, the other because of the time commitment). One child dropped out prior to finishing one full treatment due to parental claustrophobia.

So in the control group three of the four that dropped out did not complete any treatments.  This is the same criteria as to why children were excluded from the treatment group.

The last one, the one that was included from the treatment group was different - "one child was removed from the study after nine sessions because asthma symptoms worsened".  This child is clearly different than then other six.

So that is the answer to why the others were excluded, now, why were this one child's results included?

this child's scores performed at time of drop-out showed mild improvements in behavior (as separately ranked by both the physician and the parents) and these scores were included in the intention-to-treat analysis. The inclusion or exclusion of this child's scores had no significant effect on the statistical analysis.

Or in other words it didn't change the outcome one way or the other.  

The scores on the Clinical Global Impression (CGI) are not linear and you should not do math on them.

The issue here is that the authors took the CGI scores (1, very much improved; 2, much improved; 3, minimally improved; 4, no change; 5, minimally worse; 6, much worse; or 7, very much worse) and subtracted 4 from the number to change to scale to -3 to 3.   Also these scores aren't supposed to be real numbers so the difference between "very much improved" and "much improved" isn't the same as "no change" and "minimally improved".  So in numeric terms even though the difference might always be 1 he is saying that in some cases the relative difference might be more like 1.5 to 0.8.

Unfortunately for Prometheus  the decision to subject a fixed number from all of the scores does nothing except change the number from one pseudo number to another pseudo number.  Since each number is translated from the old scale to the new scale in exactly the same way and since the relative values of the numbers don't change this change is completely benign and meaningless.  This simple subtraction is not going to change any of the results of the analysis.

As to whether the scale itself is linear I would point out that the CGI scale has been in use 30+ years so I would think that the representation would have been found to be adequate by now.

Prometheus also raises the point that :

This may seem like nit-picking, but it is a serious concern. Imagine, if you will, that the numbers were replaced by colors. Is the difference between green and orange twice the difference between orange and red? If half of a population of birds are blue and the other half are yellow, is the “average” bird green? The simple fact is that it is not appropriate to treat these “scores” as though they were real numbers, to be added, subtracted and averaged.

This may seem like nit-picking but the analogy comparing these scores to colors is completely wrong.  There is an implicit ranking in these scores that is not present in colors.  For example, a rating of 1 (very much improved) is "better" than a rating of 2 (much improved).  There is no corresponding concept in colors - green is not "better" than red.

So you could argue that the relative change between the ratings isn't always the same but you really can't say that there is no relation between the two.  And as I pointed out this scale has been in use for a long time so I think this point is moot.

The statistics are wrong

I have a rule for myself - whenever I don't really know the subject matter that well I tend not to comment.  The different types of statistics and when they apply and when they don't is one of those areas that I don't know that well, so I won't spend any time rebutting the specifics of what Prometheus  is saying.  

The only thing I will point out here is that I assume that a journal has reviewers checking the statistical methods that are used in studies and would not let anything that was a misapplication of statistics be published.  

So my first reaction is this criticism is not valid.  My second reaction is that if you have any doubts, find someone you trust who really understands this stuff and ask for their opinion - don't rely on a random blogger's opinion of something like this (mine included).

The other issue is that there is no discussion of why HBOT is thought to be superior to providing the same partial pressure of oxygen at room pressure

They also didn't discuss why breathing heavily or why breathing in the southern hemisphere wouldn't work equally well either.  For that matter, they completely ignored the fact that the same benefits could have been had by standing at sea level while hoping on one leg.

This is the same thing that DoC said in his second post on the topic and the answer is still that it is irrelevant.  You can add on all of the extra things that you think the authors should have covered, but that doesn't make it a relevant criticism. 

This study was not about simple O2 vs HBOT vs normal environment.  This study was about HBOT vs an almost normal environment - that was the defined scope and that was what was presented.

So finally, in closing ....

I went back and read what I wrote above and I guess it is on the longer side.  I am not sure how many of you are still with me here, but let me close with a simple piece of advice to LBRB - 

Give it a rest already. 

Mitochondial Damage vs Smiley Faces

You would think that in light of the publicity given to the rulings in the Hannah Poling case over a year ago that the direction of research into autism would have noticeably shifted.  After all, the ruling highlighted the potential relationship between vaccines, mitochondial issues, and autism and pushed the possible relation into the public awareness.

I really expected to see some research by now that looked at the issue and addressed it one way or the other.  Maybe it is still coming, maybe it is not.  

Regardless, as I was reading Science Daily today I came across two different articles that seem to highlight some of the problems with research into autism.  One of these articles has to do with mitochondial issues and the other, well, smiley faces.

The first one was - 

Alzheimer's Disease Linked To Mitochondrial Damage

Investigators at Burnham Institute for Medical Research (Burnham) have demonstrated that attacks on the mitochondrial protein Drp1 by the free radical nitric oxide—which causes a chemical reaction called S-nitrosylation—mediates neurodegeneration associated with Alzheimer's disease. Prior to this study, the mechanism by which beta-amyloid protein caused synaptic damage to neurons in Alzheimer's disease was unknown.

Alzheimer's is a truly terrible disease and it is a good thing that research is being done to determine the causes and what can be done to correct or prevent it.

The second one was -

Coming Face To Face With Autism

Sounds serious, right?  Wrong.

In the first study of its kind researchers will use video clips of spontaneously produced facial expressions in a real life social context to explore emotion recognition in autism.

This research, carried out at The University of Nottingham, will go beyond the more artificial emotion recognition tasks that have previously been used.

Clearly these two studies are not in the same league.  

I am not saying that it is not important to quantify emotion recognition in autism - OK, maybe I am saying that it is not important to quantity that.  We know that there can be impairments in that area, so this isn't going to lead to any new treatments or any hope of a cure.

I know that this isn't that fair to compare these two articles, they clearly are being done with different purposes in mind.  But can we please move on from research that attempts to prove that vaccinations didn't do it, that looks for the non-existent genetic smoking gun,  or asks "does this look sad to you"?

Study Watch : The early stool patterns of young children with autistic spectrum disorder

There is an interesting study that was appeared online in Archives of disease in childhood called

The early stool patterns of young children with autistic spectrum disorder

In this study the authors looked at the stool patterns of a group of 13,971 children who were born in the  between April 1991 and December 1992 in the Avon area of South West England.  The data was obtained from Avon Longitudinal Study of Parents and Children (ALSPAC).  This data contains, among other things, questionnaires that were filled out by the caregiver that asked a variety of health related questions.

The data that was analyzed in this study had to do with the frequency of stools, consistency and color of stools, history of diarrhoea, abdominal pain, and history of blood in stools from several discrete time points in the child's life (something like 4 weeks, 6 months, 18 months, 30 months, and 42 months although not all data points were available for all times).

In this study group they found 86 children with an autism spectrum diagnosis.  There was complete data available for 76 of the children with autism and 12,905 of the control group.

The analysis of the data lead the authors to conclude that -

During the first 42 months of life ASD children had a stool pattern that was very similar to other children, apart from a slight increase in stool frequency at 30 and 42 months. There were no symptoms to support the hypothesis that ASD children had an enterocolitis.

So this data is meant to contradict reports of GI issues being common in children with autism.  Indeed if you read the introduction of the paper it appears the purpose of the paper is to rebut other studies done that show a relation. 

After reading the study the data appears to be on the inconclusive side for the purpose of drawing any meaningful conclusions.  But then again I am not as familiar with the symptoms of bowel disease nor that familiar with how these things are normally diagnosed.

The number of children with autism was on the smaller side (76) and the data is from parental reports over a long time period so I have to wonder at how accurate it is.  

On the flip side it is does disprove the commonly held belief that all children with autism have bowel issues from a young age.  

So who knows, just food for thought.

Flame retardants in the environment

In an earlier post I wrote about a study that showed a possible abnormal immune reaction in children with autism to a flame retardant called BDE-47.  At the time I thought it was mostly an academic concern and was just a good example of how the environment could interact differently in children with autism.

It turns out that there could be more to it than that.  According to an article on Science Daily a new report has been issued by NOAA scientists concerning the concentration of flame retardants in coastal waters -

NOAA scientists, in a first-of-its-kind report issued today, state that Polybrominated Diphenyl Ethers (PBDEs), chemicals commonly used in commercial goods as flame retardants since the 1970s, are found in all United States coastal waters and the Great Lakes, with elevated levels near urban and industrial centers.

The new findings are in contrast to analysis of samples as far back as 1996 that identified PBDEs in only a limited number of sites around the nation.

The original report is available on this page.  I have not yet read the entire report but there are some facts that have jumped out at me from the parts that I have read.

First, this report is is talking about Polybrominated Diphenyl Ethers (PBDEs) which are brominated flame retardants like BDE-47 that was mentioned in the earlier study.  So the results from earlier research could possibly apply to the PDBEs that a child is exposed to from the environment.

Second, from the executive summary of the NOAA report -

In recent years, PBDEs have generated international concern due to their global distribution and associated adverse environmental and human health effects. Laboratory studies indicate that PBDEs may impair liver, thyroid, and neurobehavioral development, and the most sensitive populations are likely to be pregnant women, developing fetuses, and infants.

So there are concerns that exposure can cause impaired neurobehavioral development in fetuses and infants. 

Third, even though production of PDBEs have been banned in Europe and Asia there are still some forms that are being made in the Unites States (from the executive summary again) -

PBDE production has been banned throughout Europe and Asia, and production of some PBDE mixtures has been voluntarily discontinued by U.S. industry, although one form of PBDE is still produced. While production of PBDE flame retardants began in the 1970s and peaked in 1999 they are still found in many consumer products including many household items. Because the application of PBDEs has been so widespread – including many consumer plastics, textiles, electronics, and furniture – scientists speculate that they may present an ongoing and growing problem in coastal environments

Which is indeed what this most recent report has found - that the concentration of PBDEs in coastal waters are growing.

The following is conjecture on my part - I am not an expert in this subject and it is entirely possible (some would say likely) that I am could be completely off base here. 

 

Having said that if you put the above pieces of information together, specifically -

1. PBDEs can impair neurobehavioral development in infants.
2. PBDEs could cause immunine problems in some children with autism. 
   
3. The concentration of PBDEs in the environment is growing.
   

what you are left with is an example of how a growing chemical exposure could be related to the growing number of cases of autism.  I am not saying that I think that PBDEs are in any way responsible for the growth of autism but still it seems plausible that there could be relation.

Just my 2 cents worth.

Another bad review

DoC has another post up at Left Brain Right Brain talking about the recent HBOT study. Unlike his prior review where he attempted to provide some real facts about the study this time he leaves that behind for the realm of pure conjecture.

I can see from the title that he intends this to be a balanced review (much like the title of this post):

Mild hyperbaric therapy for autism - Shh!…don’t say it’s expensive

His claims in the post seem to boil down to the following points:

1. Simple O2 therapy raises the blood O2 level as much as HBOT does and is effective as HBOT.
2. The authors had a disclosed financial conflict of interest therefore they have an interest in creating a long term revenue stream, possibly from insurance payments.
3. Simple O2 therapy is much cheaper, equally effective treatment.
4. And,  the most damning point, the lead author made the point that he did the study “Hoping to prove that it works.”

So there you go, more reasons why the study was no good.  

So lets start at the top, DoC asserts that simple O2 therapy is equally effective to HBOT.  I am sure being the the diligent person he is that he has a good source for that claim.  Lets see, he tags that claim with footnote 5 -

5 Hyperbarics and Hypotheses
http://www.autismstreet.org/weblog/?p=60

Uhm, that would be something that he wrote on his blog.  Lets look at that page on his site, are there any references over there?  Nope.  So it is true because he says it is true.  

Ok....

As an aside, who uses footnotes on a web page?  Most people will just throw in a link since that is more direct - especially for a reference to another site.  Methinks it is an attempt to appear more scientific.

The second point is that the authors have a financial interest in the outcomes of the study because they sell this sort of treatment.  That point is true and fair enough  - the authors do have and did disclose their financial conflict of interest.  And they do apparently make money from this treatment, so keep this in mind when reading it.

However, this criticism equally applies to almost every study of medical treatments out there.  Do you think if a drug company pays for a study on a drug they developed that they aren't looking for it to become a source of revenue? 

Next is the point that simple O2 is cheaper than HBOT.  The only source that he provides for this point is again footnote 5 - the reference back to his site.  Even still, this does seem like a fair statement.  However, since the part about O2 being as effective as HBOT remains in doubt this is point is irrelevant.

As for the last point about the authors trying to prove that it works, let me see how I can nicely put is...

ISN'T THAT THE ENTIRE POINT OF DOING A STUDY???????

Stunning Announcements

In a series of stunning announcements today two of the warring factions in the autism world have announced that they were in fact wrong and have kissed and made up, figuratively speaking of course.

The first announcement, made on behalf of Neurodiversity from the headquarters of Denial Incorporated stated that the movement was in fact incorrect in saying that autism is just a difference and that the only treatment needed is acceptance. Trevor from Right Matter Left Scatter had this to say "I don't know what we were thinking, autism really is a medical disorder and parents of children with autism should be treating their children." He went on to add "I guess we just had a bad reaction to that whole Wakefield incident and never looked back".

On the other side of the ideological war at Mercury Militia divisional headquarters General PK Handyman pronounced an end to the war against Big Pharma. He said "it seems that after the mercury was removed from vaccines the rates of autism did not go down. Perhaps we were hasty in concluding that the preservative was the cause of all cases of autism - I mean after examining the latest evidence it caused 10%, tops". He added "we still haven't figured out what is causing the rest of the cases, for all we know its genetic".

So with these unprecedented announcements the two sides have moved closer together than anyone ever thought possible and we are all hopeful that a truce can be maintained. Stay tuned.