Friday, February 27, 2009

Pervasive Developmental Disorder - Cause Unspecified?

Over at the autism blog on Lisa Jo Rudy has written what I feel is the best post she has writtten in some time.  The title of post is :

If It Looks Like Autism and It Acts Like Autism...

The basic of her post is that if there is no real difference between autism and "autism-like" symtoms because "according to the diagnostic manual, unless the symptoms can be better explained by Retts disorder, Childhood Disintegrative Disorder or Schizophrenia - people with autism-like symptoms have an Autism Spectrum Disorder."

I have to say that I completely agree.  But what is really interesting to me are the comments from the post.

There are few from an individual calling himself Joseph (who is from the neurodiverse side of life) who basically is saying that if it was granted that in this specific case that the vacination caused autism that it would be blown way out of proportion by "anti-vaxers" into a general causation statement.  Or to put it in simpiler terms the other side would say "vaccines cause autism" rather than a more specific "in some specialized cases vaccines can cause autism".

I think he is right and wrong at the same time.  It would (and is) being used as a general argument about causation but I am not convinced that it is wrong to do so.  There are likely different sub types of autism that could have their own causes.  And I think it very probable that if it has happened to one kid it happened to others.

Some of the other comments seem to be along the lines that autism is a life long disability whose cause is unknown.  If you can point to a specific cause it ceases to be autism and starts being something else that has similar features to autism.  So if you know that brain damage is the root "cause" of the symptoms of autism then the person in question doesn't really have autism but rather has brain damage.

That sort of argument could be extended to every case of autism out there.  Presumably each case is "caused" by something that is not functioning properly in the bodies.  Are there only certain caused that will make what you have a legitamate case of autism?  So if your disability is caused by a genetic problem you have autism but if it is caused by an environmental event then it isn't?  

This could actually be a good development in the world of autism.  There has long been a disagreement between the various groups fighting to claim "what" autism is and how to "view" it.  Perhaps this is the start of breaking the monolithic spectrum into descrete blocks and acknowledging that there are different sub groups that can and do have quite different underlying causes. 

Thursday, February 26, 2009

Pervasive Developmental Disorder - Not Otherwise Specified

There is a new case that has hit the public awareness concerning one Bailey Banks who "suffered a seizure and Acute Disseminated Encephalomyelitis ('ADEM'), which led to Pervasive Developmental Delay 'PDD'." His case was somewhat recently (2007) decided by the special masters of the vaccine court in his favor and awarded compensation.

From the decision (page 27):
Based upon that finding of fact, it follows as a natural conclusion that Petitioner has carried his burden of proving to a preponderance that the MMR vaccine at issue actually caused the condition(s) from which Bailey suffered and continues to suffer. Inasmuch as the other elements of § 300aa–11 (b) and (c) have already been satisfied, the Court holds that Petitioner has met his burden on his case in chief.

These facts likewise satisfy the Althen test set forth above. Petitioner’s theory of PDD caused by vaccine-related ADEM causally connects the vaccination and the ultimate injury, and does so by explaining a logical sequence of cause and effect showing that the vaccination was the ultimate reason for the injury.
So the chain of events was MMR to ADEM which lead to PDD.

So, the question here is what is meant by PDD? A footnote on page 2 of the decision makes it clear that the term PDD is being used to refer to the child's diagnosis of PDD-NOS:
Pervasive Developmental Delay describes a class of conditions, and it is apparent from the record that the parties and the medical records are referring to Pervasive Developmental Disorder Not Otherwise Specified (“PDDNOS”) ... In the interest of consistency, the Court will follow the convention adhered to by the medical records and by the parties in this case, and this condition will be referred to herein as “PDD”.
So PDD is being used to represent PDD-NOS. So what is PDD-NOS? The decision also includes a reference to the definition from the Yale School of Medicine:
Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified
So PDD-NOS is normally used to refer to people who have most but not all of the features of another form of PDD.  There are 5 subtypes of PDD : Autism, Asperger's, Rett's disorder, Childhood disintegrative disorder, and PDD-NOS.  Rett's has a known genetic cause and mainly affects girls and Childhood disintegrative disorder is very rare and doesn't apear until after 3-4 years old (whereas autism is always before 3).  I think we can safely eliminate Rett's and CDD from the discussion.   So that means that the PDD-NOS here is refering to a "subtreshhold" condition of either autism or aspergers.

Or in other words, the MMR lead to ADEM which lead to a form of autism.

Of course the reactions from the autism world have been quite heated as normal. The left wing started this whole debate with this post by Robert F Kennedy Jr and David Kirby in combination with a full page add in the USA today.  The right wing is of course attempting to highlight the use of PDD instead of the more specific term autism and to point out that the title of the decision is "Non-autistic developmental delay".

So, what to make of all of this?

First, PDD-NOS is normally considered a diagnosis that falls on the autism spectrum. This is the official diagnosis that my children have and they are considered as having autism. So saying PDD-NOS is, under normal conditions, the same as saying a form of autism.

But the title makes it clear this this is supposed to be a "Non-autistic developmental delay" so how can we reconcile between the normal usage of PDD-NOS and the distrinction used here?  I think an answer to this deiliema can be found on page 7 of the decision :
Moving on to the alternative hypothesis/diagnosis of autism, Dr. Lopez distinguishes autism as a more generalized condition without a known etiology, and contrasted it to Bailey’s condition, which he says is clearly attributable to demyelination based on neuroimaging evidence.
In other words, it isn't autism because we know what caused it.  Or what is more likely the case, we won't call it autism because  we know a vaccine caused it.

Monday, February 23, 2009

Congratulations, you've got Autism!

Well, this is one post on autism that I never expected to see:

Life-Changing Benefits of Diagnosis

Accoring to Dora Raymaker at the site getting a diagnosis of autism isn't all bad.

So often a diagnosis anywhere on the autism spectrum is discussed in apocalyptic terms. The horror. The doom. Hearts sink and mouths go dry. That, however, was not my experience. Nor does it seem a common experience for people on the spectrum themselves.

The terms of "horror" and "doom" are appropriate for what the parents of newly diagnosed child do often feel. Especially if your children are very young. To deny that this is the case or to suggest that these are not valid feelings to be having is very harmful to the parents and very destructive to the process of dealing with a diagnosis.

If you are the typical parent you have daydreams of who your child will be when they grow up, what college they might attend, them getting married and having a family of their own. When you receive the diagnosis that future is torn away and replaced by a huge uncertainty about the future.

Instead of wondering what college they will go to you wonder if that will ever be able to live unassisted. Instead of wondering what profession they might choose you are left wondering if they will be able to support themselves. Instead of wondering who they will marry you just hope they will be able to have friends of their own.

Of course it might not be that bad - they could be high functioning enough to be able to function in society on their own or with minimal supports. They could go on to write blogs about how you should be happy to receive the diagnosis.

The future is not determined and who you child is has not been written yet.

But still, what you expected and hoped for your child is torn away and replaced with nothing but fear for what the future might hold and the desperate hope that it will turn out OK.

The post continues:

There are enormous internal, personal benefits to diagnosis. For the autistic individual, self-awareness is one of the necessary keys to effective self-advocacy and to empowerment. Without properly understanding your needs, you can't get them met.

If you lack the communication skills to even be able to understand what someone is saying to you how could you possibly even understand let alone be in a position to be self-aware of what the diagnosis means for you?

There are benefits to parents too--especially those parents who were wrongly blamed (at times by medical professionals even) for their child's behavior. Parents who maybe too felt guilt for doing something "wrong" that lead to their child's struggles. Parents who, given better understanding, are also now empowered to be more effective advocates for their kids, and better able to accept themselves as good parents.

Ah, so we parents should feel better because now we know that we didn't "cause" our children's struggles. Except, on the other hand we did cause them because autism is "caused" by genetics or being too old of a father or whatever the latest "pure genetic" theory of the day is.

I think Ms Raymaker forgets the fact that the majority of the people being diagnosed with autism currently are children. And while she does have a point that for the smaller group that are adults or have been misdiagnosed in the past that getting the appropriate diagnosis can be a good thing that does nothing to address the fact that the rest the group doesn't share this benefit.

I think if she wanted to be a true advocate for people with autism she would stop living in a fantasy world and come live in the real world where a diagnosis of autism is not a "life-changing benefit". It is a life changing event and not normally a positive one for those involved.

Do your homework

From the 'just because its hard doesn't mean it is isn't worth it category' we have a recent post from Lisa Jo Rudy over at the Autism blog on :

Why "Doing Your Own Autism Research" Is Tougher Than It Sounds

Go read the post.

Apparently doing your homework and taking the time to read the research is hard, especially when it comes to an emerging field like autism. She does have a point that it can be overwhelming, especially at first, when you find countless opinions across a huge range of topics.

After the diagnosis you are left to deal with the enormity of the change in your (and your child's) life not to mention where to turn for assistance for how best to approach the problem. What do you try?

To digress for a moment, this is where I have a huge problem with neurodiversity. As I have written about before, if a parent of a newly diagnosed child runs across one of their sites soon after a diagnosis, they run the risk of deciding to do nothing to help their child. This is what neurodiversity preaches as part of its "acceptance" mantra. If you have been around the block a few times and decide that this approach works better for your child then so be it.

But if you are new to the autism world and don't really understand it yet and fall into believing this without first fully understanding the ramifications and other options available, then this is a problem.

Anyway, back to the post at hand. Lisa Jo Rudy continues by pointing out that it is hard to understand and make sense of the science and it is equally hard to separate the "good" from the "bad" studies.

She finishes up by recommending the book "Understanding Autism for Dummies".

Now, for full disclosure, I have not read autism for dummies, I am sure it is a good book. However, I think I have to disagree with what what is being said here.

It is true that it is difficult to get started understanding what autism is all about. But that does not mean you should not make the effort. Just because it is a daunting task does not make it not worthwhile to undertake.

Because like it or not once autism comes into your life in the form of a child or other family member diagnosed with autism it is going to be a major part of your life from that day forward.

It is definitely worth the time and effort that you put into it and, in reality, even though the subject area is large it isn't that complex. You start with the basics and work your way up from there - you literally have the rest of your life so take your time and work up slowly.

So if you have a child that is depending on you for support and to help them on their path to dealing with their condition, don't think of it in terms of hard or being "tough". Think of it in terms of something that is needed for you to help your child.

Because honestly, if you aren't going to put the time in to help your child then no one is.

And now a word from our sponsors

So, do you think that medical research is unbiased and pure science free from the undue influence of money? Think again.

Publication Of Flu Vaccines Studies In Prestigious Journals Are Determined By The Sponsor

The authors looked at 274 studies on the flu vaccine and analyzed "their methodological quality, prestige of the host journals (impact factor) and citation rates in the scientific literature." The quality of the study had no relation to where the study was published or how often it was cited by other studies. They also found that the poorer quality studies were those whose that were in favor of the vaccination. The most important factor that determined where the study was published was whether the study was funded in part or wholly by industry.

So what about the organizations that are supposed to safeguard the process?

Drug Industry Controls Many Scientific Societies And Journals: How Can Intellectual Freedom In Medicine Be Preserved?

According to a article by the editor of the Journal of Psychotherapy and Psychosomatics the process of publishing medical research is controlled, at least in part, by the drug industry. Industry "has full control of many scientific societies, journals and clinical practice guidelines." They also act as the editors and reviewers of medical articles and potentially exercise a fair amount of control over what type of research is published and may block research which is not in their interest.

I think the best advice here is to follow the money tail. If there is an industry that stands to make or lose a good deal of money from research then chances are they are going to try to influence it in the favor.

Sunday, February 22, 2009

A tale of two controversies

The March 2nd issues of Newsweek has story about the link between the MMR vaccine and autism entitled Anatomy of a Scare. It is worth reading as long as you keep in mind the fact that a full half of the story has been omitted and read it sideways to correct for the slant.

But that story is what it is. What I wanted to point out is another article written by the same author and appearing on a Newsweek blog at about the same time. This one is Bookshelf: 'Toxic Truth'. The book being reviewed is the story of lead which is "is a potent neurotoxin" and the fight to have it removed from the environment.

The closing paragraph of the second story is particularly appropriate:

Pick your poison—phthalates in toys, methylmercury in fish, pesticide residues in foods, carbon dioxide and climate change, the list goes on—and the pattern looks familiar. The amazing thing is that industry gets away with it time and again. As Santayana said, those who forget the lessons of history are condemned to repeat it.

I couldn't agree more.

Friday, February 20, 2009

Hello Mr Robot, how are you today?

Over at we-don't-like ABA central, otherwise known as Ms. Chew has this to say:
One of the criticisms of Applied Behavior Analysis (ABA) is that this kind of teaching turns children into "robots," due to its use of discrete trial teaching (in which tasks are broken down into smaller units), its emphasis on data-taking, and its being based on the principles of B.F. Skinner's behaviorism.

So, lets break down why ABA is bad this time.
  1. due to its use of discrete trial teaching (in which tasks are broken down into smaller units).

  2. You have children who have a hard time understanding communication so you break tasks down into small parts that they can understand and teach those. So using a teaching method that works turns the child into a robot?

  3. its emphasis on data-taking

  4. Definitely very robotic here, this data-taking. It is almost as if they were attempting to track progress so there was evidence that the treatment plan is working. But, I am confused, is it the therapist recording the data or the child?

  5. its being based on the principles of B.F. Skinner's behaviorism

  6. So Applied Behavioral Analysis is robotic because is is based on behaviorism. Hmmm, so what is this obscene thing, "B.F. Skinner's behaviorism". I don't know that much about the specifics of his principles, so lets ask our good friend wiki to help:

    Finding the behaviorism of his time to be problematic, Skinner branched off his own version he called Radical Behaviorism which unlike methodological behaviorism did not require truth by consensus so it could accept private events such as thinking, perception and emotion in its account. Also, unlike all of the other behaviorists such as Tolman, Hull and Clark, Skinner's version radically rejected mediating constructs and the hypothetico-deductive method, instead offering a strongly inductive, data driven approach that has proven to be successful in dozens of areas from behavioral pharmacology to language therapy in the developmentally delayed.

    So taking thinking, perception, and emotion into account and using a data driven approach. This makes our children into robots?

So, does Ms Chew have anything good to say about ABA?

BA teaching has been very beneficial to my son's learning, but often precisely because of the "human element"---because of the people who are teaching him, and who don't always say the same phrase exactly the same way, and sometimes respond one way and sometimes don't.

So the good thing about ABA is when it isn't?


Thursday, February 19, 2009


I ran across this rant written by Kev from Left Brain Right Brain today talking about authority and who has it. And more importantly, who wants it. I suggest you go read the entire post, but here are the highlights.

You have to understand. This is not about scientific truth – or even truth at all – to these people. Its about winning and its about pushing their antivaccine beliefs as fast and far as they can.


To these people science has no authority. Doctors have no authority. The Special Masters have no authority. The only people who have authority – real authority – can probably be counted on the fingers of one hand.


But more than that, scientists and doctors need to get online and blog, get on Twitter and use them. Talk to people in their own language. Screw decorum. Ask people who’ve been using their blogs to support vaccines for years what to do and how to do it.


This needs to happen because we’ve already lost one generation of kids to their loony parents. The loony parents who only recognise the authority of celebs, authors and each other in nests of email lists and blogs.

The first thought I had after reading all this was that it is just another anti-anti-vaccine rant. But then I thought about it some more and came to the conclusion that that there was some truth in what he was saying. The question I was left with is who is believed and why are they believed?

Kev from LBRB will have you believe that anyone who doubts vaccines and their safety is anti-vaccine and anti-science. This is obviously not true. These are no longer the Bush years were you are with us or against us - you should be able to question something without instantly being put in the against camp.

The obvious retort here is the "asked and answered" line. The problem is that science does not work that way. When anyone starts talking about "scientific truth" you know that they are trying to sell you something - there is no such thing as "truth" in science. If think you know the "scientific truth" of something, I can guarantee you two things. First, you are wrong. Second, you have closed your mind to new ideas.

But why do some people have authority and others not? I think the answer is simple.


So why have people lost their trust of the medical establishment?

There was a time when it was thought that doctors had all of the answers and were far wiser than the average person. And for a while that was true. But I believe the reason for that was the information they had. As long as that information was restricted and difficult to obtain this system worked; doctors really did know a lot more than the average person could hope to.

Then came the information revolution and tools like the internet. Now, anyone can do a google search and learn reliable facts about most health topics. Now, when you go talk to your doctor you can have an idea what it is that you are talking about.

The mystery of arcane knowledge is gone. What you are left with is a person like anyone else, someone who perhaps has a better understanding of medicine in general but not necessarily of the area that you are interested in.

So the implicit trust that was once there is gone. Doctors now have to earn their trust and reputation just like anyone else.

So how can the trust be reestablished?

Kev would have you think that scientists and doctors should launch what is in essence a PR campaign using new media to get the word out. What he wants it for there to be many copies Dr Paul Offit.

I think that is the worst idea possible.

I think the way to regain the authority and the trust is to actually listen to what people have to say and stop assuming that you have all of the answers. If you are a doctor and a parent is telling you about problems that they think were caused by vaccinations, take their concerns seriously and listen to what they say. Don't instantly start telling them about how that can't happen or how all of the evidence says that it can't. Don't treat it as an opportunity to "educate" them about the "scientific truth" of the matter.

Listen to what parents have to say and address them as equals. Because more and more the knowledge level of the average parent is going up.

Whatever you do, don't say (as Dr Offit does) "studies show that in theory, healthy infants could safely get up to 10,000 vaccines at once" because that is such a line of BS that it isn't even funny. If one shot has the potential to do enough damage that (in some rare cases) it can kill a child, what would 10 or even 100 do?

On some level Offit might be right with that a normal, health child's immune system can handle a large amount at a time but I seriously doubt that you could safely administer even 10 different shots at once. It took less than that to cause Hannah Polling to develop autism. So lines like that do nothing but insult the people you are talking to and make them not want to trust you.

So how to restore the trust and authority.

If you really want to go the way of new media, how about using the model of Dr Sears instead of the awful Offit method. On his blog Dr Sears takes the time to intelligently write about all sides of the issue before giving what his opinion is. If you don't happen to agree, he suggests alternatives that could be tried to get to a mutually desirable end. If you post comments to his blog, he will even give you an honest answer. At no time does he pretend that he has all of the answers or that a question should not even be considered.

Maybe Dr "PR" Offit could learn from his example.

Wednesday, February 18, 2009

Hostility in the autism world and Brian Deer's foot-in-mouth problem

One of the facts of the world of autism that is missed by people who don't follow the daily debates is how much hostility exists. Take this recent post on Left Brain Right Brain, a popular site for all thing neurodiverse. There are over 280 comments on this thread. If you read the comments you are treated to a "rational" discussion with comments like these:

"Rant on kiddies"

"I don’t think Doherty’s spending much time doing any serious thinking"

Now I think he’s a crap human being.

"Jesus you people are stupid."

"And, as for your behaviour of capitalising my ‘Distinction’ grade, are you really that f**king jealous that I did so obviously better in my studies that you seem to have done? Very childish, Harold. You really are being very childish."

The irony of that last one is almost off the charts.

But my favorite one is by one Brian Deer. This would be the journalist that wrote the recent articles accusing Dr Wakefield of altering the the data in his study. Given the number of comments under this name I am guessing that he is the real deal, otherwise the owner of the site would have deleted the comments.

Mr Deer wrote the following in reply to a comment by someone questioning his recent stories and role in the Wakefield case before the GMC:

And they wonder why their children have problems with their brains.

When called on his comment he responded with the following:

Well, actually Joseph, I didn’t intend that observation as an insult. I made it as a shorthand way of raising an issue that I believe may reasonably be raised.

I genuinely think that the three individuals I was criticising – and I know who all three of them are – do need to question whether their personal behavioural issues are indicative of a better explanation for their children’s issues. Certainly a lot better explanation than MMR.

The festering nastiness, the creepy repetitiveness, the weasly, deceitful, obsessiveness, all signal pathology to me.

I think that comment tells you all you need to know about his character.

Tuesday, February 17, 2009

Study Watch : Asthma and Epigenetics

This may seem to be to a little off topic, but please bear with me, I have a point, honest.

I ran across a study today dealing with pollution, the environment, epigenetics, and asthma. The open access study was published on Feb 16 on PLoS One and was entitled:

Relation of DNA Methylation of 5′-CpG Island of ACSL3 to Transplacental Exposure to Airborne Polycyclic Aromatic Hydrocarbons and Childhood Asthma

That's a mouthful. I think I prefer the title from a Science Daily summary of the study:

Pollution-related Asthma May Start In The Womb

I am not as familiar with the terminology and current asthma research so I am sure that I am going to be getting some of the details wrong, but here goes..

This study seems to be talking about the impact that an environmental pollutant can have on unborn children. Specifically the authors link polycyclic aromatic hydrocarbons (PAHs) to epigenetic changes in fetuses that are thought to impact some of the genetic pathways that are involved in asthma.

From Wikipedia:
The term epigenetics refers to heritable changes in phenotype (appearance) or gene expression caused by mechanisms other than changes in the underlying DNA sequence (hence the name epi - "in addition to" - genetics). These changes may remain through cell divisions for the remainder of the cell's life and may also last for multiple generations. However, there is no change in the underlying DNA sequence of the organism;[1] instead, non-genetic factors cause the organism's genes to behave (or "express themselves") differently

In crude terms you can think of epigenetics as a dimmer light switch that can turn genes on and off.

So, at the risk of oversimplifying the study it seems to be saying that an environmental factor causes epigenetic changes which can then lead to changes in gene expression which leads to asthma.

I promised a point, so here it is. If you remember I was recently talking about a study that demonstrated that identical twins could have genetic-like differences that were thought to account for the differences in the severity of their autism? My question at the time was how these differences could happen since identical twins are, well, identical.

Based on the results from this study on asthma it seems possible that it could be the environment that is causing the changes. Now why and how this could impact one twin but not the other is still a mystery to me especially considering the fact that most identical twins share resources in the womb. But as illustrated here the environmental factors that the mother is exposed to while pregnant can result in changes in her children.

Let me put this in simple terms:

Environmental pollutant + epigenetics changes might = autism

Anyone out there want to point out why I am wrong here?

Monday, February 16, 2009

Study Watch : Autistic enterocolitis: Fact or Fiction

Autistic enterocolitis. This is a term that was first made infamous by Dr Wakefield by his controversial 1998 study. Most people will who think of his study link it to his hypothesis of a link between the MMR vaccine and autism. However, there is another facet to that study that tends to be overlooked. The idea is that there is a subgroup of the autism population that has gastrointestinal symptoms along with autistics ones.

With that in mind we turn to a recently published brief study:

Autistic enterocolitis: Fact or fiction?

This short paper is primarily a review of some of the existing literature in the field although the authors also give a short synopsis of two cases where GI issues were found in young adults with autism. They also touch on the some the of theories about how GI issues and autism could be linked.

While the authors never directly answer the question of Fact or Fiction they do make clear that they feel there is a need for more study in their closing paragraph:

Although the idea of a shared pathophysiology between GI disease and autism remains controversial, the evidence presented so far warrants further exploration at the very least. Be it an immune-mediated connection, versus a 'brain-gut axis' interplay such as seem in irritable bowel syndrome, the increased prevalence of GI symptoms in this group of patients cannot be denied, nor the added distress that these symptoms could have on an individual who is already communicatively challenged. Clearly, more studies need to be conducted to better define the relationship between ASDs and the GI tract.

I couldn't have said it better.

Friday, February 13, 2009

Study Watch : Flame Retardants and the Immune System

From the upcoming February issue of Journal of Neuroimmunology:

Preliminary evidence of the in vitro effects of BDE-47 on innate immune responses in children with autism spectrum disorders.

This study looks at how BDE-47, a brominated flame retardant, effects the immune system of children with autism. Basically the authors extracted and isolated peripheral blood mononuclear cells from a group of 19 children with autism and a control group of 18 "typically" developing children and tested the immune response of these cells to BDE-47.

The results show that the cells extracted from the children with autism show a stronger immune reaction than the cells from the control group. The study suggests "a biological basis for altered sensitivity to BDE-47 in the ASD population" - or children with autism might be more sensitive to the stuff.

The downside here is that this is only a preliminary study and cells don't always react the same way in the body as they do in a test tube.

But still, this is one more small piece of evidence that the environment could play a role in autism.

Thursday, February 12, 2009

One, two, three strikes you're out at the Autism Omnibus

As is being reported by everyone and their brother today, the U.S. Court of Federal Claims has ruled in the first three test cases of the autism omnibus. The court firmly rejected the theory that vaccines had anything to do with autism - or more specifically they said that the petitioners failed to prove their case.

There have been statements released from autism organizations such as Autism Speaks, TACA, and Safe Minds.

There has been coverage from blogs such as Age of Autism, WSJ Health blog, neurodiversity, a double dose from Left Brain Right Brain, and many others.

There has been coverage from the mainstream media at CNN, The Wall Street Journal, The Associated Press, Reuters, The New York Times, and many more.

I actually read through the 183 page ruling the in Cedillo case by Special Master Hastings. It is an interesting read and he takes you step by step through his decision process. One thing that stood out to me was the fact that seemingly at every turn he rejected the petitioners' theories and accepted the government's. In the entire document the only witness for the petitioners that he seemed to give any credibility to was the mother of the child.

I am left with the impression that the special master believes that the petitioners did a horrible job and failed to prove a single point. He makes his opinion of the medical evidence abundantly clear in his conclusion:

After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr. Krigsman and some other physicians, advising the Cedillos that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions, have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment

I did not read the other opinions but I would suspect that they have a similar tone.

I would have been very surprised if the cases had been decided in the favor of the petitioners. The cost of such a decision would have made President Obama's stimulus package look small and the damage that would instantly be done to the vaccine program in this country would have been catastrophic. If there were a ruling that autism was linked to vaccines would you vaccinate your child?

So in that regard the rulings are not a surprise. I just did not expect the complete rejection of every single argument. Especially since we are talking about a condition that we don't know why is happens or what causes it or even if the rate of it is increasing (my money is on it increasing).

I think the special masters wanted to ensure that this theory does not have any legs left to stand on so as to restore confidence in the vaccine program.

I just sincerely hope that they are right.

Wednesday, February 11, 2009

There is something wrong with neurodiversity

Over at the site, which seems to be quickly becoming home base for a group of neurodiversity bloggers, we have yet another guest author invited to post. This time we are treated to the writing of Estee Klar who is perhaps best known for her Joy of Autism blog.

Call me silly but the title of the her blog strikes me as an oxymoron. You want to talk about the joy of children, sure. The joy that your child brings to you, that works too. But the joy of autism? Really? Your child has autism and that fact brings you joy? Anyway...

The post is supposedly about how autism is viewed in Canada. It starts out by talking about the initial diagnosis process - any parent whose child has autism has been there. But then we get to this passage:

Whatever the entry point into the foray of autism, what lies ahead is largely dictated here in Canada of what the government dictates is the proper autism “intervention.” Based on the notion that autism is a disease or something “wrong,” the government of Canada continues to endorse an intervention promoted by a series of parents in Canada.

That statement just floors me. If you have a condition that is defined in something called the "Diagnostic and Statistical Manual of Mental Disorders" then here's a hint:

There is something wrong.

She continues

This government-stamped intervention is Applied Behavioural Analysis or ABI (Applied Behavioural Intervention). Based on a history of viewing cognitive disability as an illness, a human deficiency, and of treating Canadians with cognitive disabilities as less than human in our own history, the Canadian Government has continued to base its autism policy not in the social model, but in this deficiency or medical model

Here's another hint, by definition autism is a medical condition. If you define it to be something other than what the word means we are no longer talking about the same thing.

Notice if you will the subtle association between ABA and treating people as "less than human". As I have written about before this is a common ND theme.

And there is still more

As long as we continue to view autistic people as requiring an intervention to make them “better,” our system can never claim that it accepts diverse citizens

People with autism, especially young children, certainly do require intervention to help then learn the skills that are required to survive in the world. But I guess little things like being able to dress yourself, learning not to injure yourself, understanding that you can't run out in the street directly in front of a car, or really silly things like learning how to talk aren't really making someone "better". If we all just accept our "diverse citizens" and possible sing a verse or two of kumbaya everything will be perfectly fine.

Acceptance will not help your child be able to survive in the world on their own. If that were all it took then there would have never been a need to institutionalize people with autism. That was the common response to autism only a short few decades - do we really want to drop the interventions that have given people with autism a chance of being able to function on their own in society?

Oh wait, that wasn't very accepting of me. Of course there are many high profile people out there with autism who are doing fine in living in society and many of them have not had the interventions that are being talked about. However, I think they are the exception rather than the rule and that the silent majority could have benefited from the extra support and help.

The thing I just don't get it is why people like Ms Klar go around spouting this nonsense. She obviously loves her child and wants the best for him. And I am assuming that she is doing what she thinks is best for him. But what possible reason can there be for trying to reclassify what is a medical condition as just a "difference" or for trying to say that there is nothing "wrong" in autism.

I just don't get it.

Edited to add : Apparently I am not the only one who doesn't like the post.

Tuesday, February 10, 2009

Study watch : Ouch, my stomach

This study is a little older, it was first published online in Sept 2008 but will appear in the March 2009 issue of Journal of autism and developmental disorders. The study is (long title) :

Gastrointestinal symptoms in a sample of children with pervasive developmental disorders.

I have not read the full text of the study as of yet, but from the abstract it talks about GI symptoms in a population of 172 children with autism. In this sample there were "thirty nine (22.7%) were positive for GI problems, primarily constipation and diarrhea". There were no differences on some measures of adaptive functioning between the groups but the group with GI problems "showed greater symptom severity on measures of irritability, anxiety, and social withdrawal. Those with GI problems were also less likely to respond to treatment."

The problem that is immediately apparent is that there isn't any information about how common GI problems are in a sample of normal children. However I would imagine that if 22% of "normal" children had persistent GI issues that it would have been reported by now.

I find this study interesting because it documents that there is an identifiable subset of children with autism that have GI issues. If there is a GI issue then it is possible that some of the symptoms of autism can be corrected by addressing the dietary issues, especially if the group with GI issues show greater symptom severity as eluded to by the abstract.

But there are those that do not accept that this is the case or say that it is unrelated to the autism. For example, the self-styled "Autism Diva" frequently argued that there was no relation as in this sequence of comments:

The GFCF diet should NOT be tried on all autistic kids and all kids with behavior issues. This is just bizarre and has not basis in fact.

If a child is getting sick after eating wheat or dairy, then fine, change the diet, but that does nothing to the autism.

If you read through the comments you will see a lot of talk against the relation between autism and diet/GI issues. Now I did partially instigate this sequence of comments but this is fairly representative of a normal exchange.

I do know that my daughters both had GI issues and that their stomaches were bloated consistently for the first two years of their lives. Once we changed their diet the issues diminished and then faded (although there are still some issues occasionally). As a side benefit their attention, ability to focus, and eye contact went up as we restricted their diet.

But that is my experience, your millage will vary.

Monday, February 9, 2009

It was Wakefield, in the Study, with the false data?

Over the weekend the the Times Online has reported the results of an investigation that "prove" that Dr. Wakefield altered the data behind his controversial study linking the MMR vaccine and autism. The stories are both authored by one reporter by the name of Brian Deer. Mr. Deer has been involved in covering this story for many years and seems to attempting to be Wakefield's Harry Markopolos.

For those of you who don't know or who have been hiding under a rock for the past several years, Dr Wakefield is currently facing charges in the UK over this matter. It is worth noting that the trial/hearing/procedure is still currently underway and no verdict has yet been rendered.

These reports have of course created the usual stories for the usual places with the right wing of the autism debate proclaiming that this is yet another nail in the coffin for the theory and the left wing proclaiming that this is yet another smear job by Brian Deer.

Then you have the instant classics like this one :

How many of you have read Peter Pan? Do you remember Tinker Bell? Do you remember her saying that every time someone says that they do not believe in fairies, a fairy dies? It is the same with immunisations. Every time someone says they don't believe in immunisations, a child will die.

(Ok, that isn't really a fair quote, but that passage is way over the top. Go read the original for the complete context)

And yet another one :

This may cause a firestorm in the antivax community, but there are two things I will guarantee: the first is that in the end antivaxxers will stick to their beliefs that vaccines cause health problems like autism, because this is not and never has been, for them, about the facts and evidence. It’s a belief system, and like most other belief systems, it is impenetrable to evidence.

And then you have the ones here and here and here, really, it is everywhere.

Dr. Wakefield has responded to the allegations here.

The standard line is that his study has been disproving many times over. But that is a funny thing, if you go looking for a study that attempts to replicate his findings, there aren't many. Oh there are studies that were attempted that used other methodologies, and then there are the studies that looked for a correlation between autism and the MMR and failed to find one - but most took a different path than the original study.

The only decent size study that I am aware of that attempted to replicate his methodology is this one. (This study is open access, so go read it yourself for the full picture). Now this study is presented as a study disproving the theory - yet there is one very interesting tidbit that is buried in the study. Apparently out of the 38 subjects in the study (25 cases and 13 controls) they did find evidence of the measles virus in the GI tract of two of the subjects - one from each of the groups.

You may say so what, but what I find interesting is that before this it was not accepted that it was possible for the measles virus to do this.

So what's the bottom line here? The new allegations from the Brian Deer is based on "hidden" and "confidential" medical records so there isn't any way to verify what he s saying. Mr Deer clearly has an axe to grind - which doesn't mean he is wrong but it does cast some doubt on what he is saying. Science hasn't properly attempted to replicate his study and the only one that did hints at some things that weren't though possible.

Overall I think I have to agree with that Harold Doherty wrote here. The jury is still out and it is premature at best to declare that Wakefield is guilty.

Edited to add:

This is an example of how these sorts of allegations could be handled differently (site requires free registration).

Thursday, February 5, 2009

Study Watch : Nuclear and Mitochondrial Genome Defects in Autisms

An interesting study came out recently entitled Nuclear and Mitochondrial Genome Defects in Autisms. It is an open access study so you can go and read it for yourself.

This study is basically a review of some of the known genetic defects that are implicated in autism. It is a little on the dense side but if you are interested in the topic (or are having trouble sleeping) it is good reading.

The part that I found most interesting was the section on monozygotic (identical) twins - since my children with autism are identical twins I guess this is only natural. The authors discuss some of the research that others have done and discuss their own results with two sets of twins.

I am sure that I will get some of the terminology wrong and am missing some of the nuances that are in the original text, but...

Basically one of the two sets of identical twins differed in the degree of severity of autism and when they looked at the genetics of the twins they found very small differences. The twin that exhibited more genetic variance was the more severe of the two.

The authors also note other studies that also show some differences in twin pairs.

The questions I have, and maybe I am missing obvious, but given the fact that identical twins are basically identical - especially at very young ages when autism is thought to develop - what causes the genetic differences between the twins? And how is it possible for the twins to have different levels of severity if autism is genetically determined?

Anyone know?

Things that make you go hmmm

I ran across this post the other day. I don't necessarily agree with what he is saying but it does make for interesting reading.

Monday, February 2, 2009

The problem with neurodiversity

I just wanted to quickly highlight one of major the problem with the so-called "Neurodiversity" movement. For those who haven't seen this term there is a passable if skewed definition on Wikipedia -

Neurodiversity is an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.

or basically respect and acceptance for people on the autism spectrum. Sounds good, right? I wish it were that good it reality. What starts out as acceptance leads to all sort of strange notions about how your shouldn't attempt to "cure" or change people with autism, you should rather focus on changing society to accept them. While I could go into much more detail about this movement I wanted to highlight a specific example of why I believe that this concept is very harmful to people with autism.

The case in point will be a post on a blog called The Autism Crisis that is written by a women with autism named Michelle Dawson. Ms Dawson is an active advocate in the field of autism and is a large supported of the neurodiversity movement.

Ms Dawson believes that ABA therapy for child with autism is not a good thing and does not work. In her most recent post on the subject she goes back to the very early days of research into ABA from 1949 and gives yet another slanted view of what modern ABA is about. Well, actually, she isn't really talking about what ABA is like now any more than talking about using leeches is talking about the cutting edge of neurosurgery.

She is entitled to her opinion. However, and this goes to the heart of what is so wrong about this movement, if you look at the comments on the above linked post, you come across this gem :

I have been reading some of your very well-written work and am grateful to you for providing this perspective. I believe that my 28 month old son, who does not use words, is on the autism spectrum. While I wish to help him communicate effectively in whatever way suits him, my immediate response upon learning the basics of ABA/VB was repulsion and dread. Due to the overwhelming push in favour of ABA, however, I had begun to become resigned to it.
I have no interest whatsoever in changing [him], all I want is to be able to communicate with him. Thank you again for this under-represented and important perspective.

Ms Dawson responded in a subsequent comment :

...In my view, everyone changes through development and learning and so on, but I'm concerned when it's assumed that autistic traits and abilities, the way we develop and learn, and so on, are simply wrong. I'm also concerned about the poor quality of research in the area of ABA-based autism interventions.

(This is only a snippet of the full comment, I would suggest reading the entire original post and comment to get the full context.)

There are a few interesting things in his little exchange. Notice the mother saying she "has no interest whatsoever in changing him" and Ms Dawson's "assumed that autistic traits and abilities ... are simply wrong". These are core ideas in the neurodiversity movement and quite wrong headed. But I digress.

The real problem I see with this exchange is the impression that readers of Ms Dawson's blog are left with about ABA. ABA might not be for everyone and it certainly isn't a cure all but it is a widely accepted therapy to help young children with autism. The science is in on this treatment and it can help.

So, what we have here is a parent who is worried that their child has autism and what Ms Dawson has done is to convince her ABA is a bad thing before she even tries it or gets a true professional opinion about whether or not it would help her son.

Ms Dawson has never met this person, never met the child in question and yet she has quite possibly changed the course of his life by convincing his mother to not pursue a therapy that could give him the skills he needs to live in the world. I have no way of knowing whether any of this will actually happen or not. It is possible that his mother will decide to give ABA a try after all and it won't help. Or it is possible that she will and and it will work wonders for him.

But the way that is looks now Ms Dawson has convinced a parent not to try something that could potentially make a large difference in this child's life.

That's a problem.