Thursday, August 19, 2010

The Pertussis Outbreak in California Revised

About a week ago I presented some data about the pertussis (whooping cough) outbreak in California and the US as a whole and suggested that the overall picture for the country was mixed.  Media outlets had been calling this the worst outbreak in 50 years but the number of cases for the country as a whole and for the majority of states were down from last year.

Of course as soon I wrote that, the CDC published new data and made a liar out of me.  That new data more than doubled the number of cases in California and pushed the country as a whole past prior years and on par with the last outbreak year.  I said in the update to my prior post that I was confused by the huge spike in the total number of cases because it didn't make much sense.

Well, it turns out I was right to be dubious.  The CDC has published data for the current week and revised their total numbers for the year significantly downward.  At the end of July (2 weeks ago), the total number of cases in California stood at 809 - a number that has been stagnant for 3 weeks.  Last week, that number jumped to 1,964 - a 150% change.  Well, in the current week, that number was slashed to 1,210 - a drop of 38%.

The number of cases for the country showed a similar pattern - the total number of cases went from 7,781 to 9,412 and then back down to 9,194.  I am including the updated charts below in case anyone is curious

I can't imagine what is behind these massive revisions in the numbers, you wouldn't think that it would be possible to be mistaken about 754 cases.  Maybe the cases are being counted too aggressively or there are a few labs that were doing some very bad testing.  Regardless of the reason, these changes don't inspire confidence.

If you look at how other epidemics, such as H1N1, have been handled recently, I think we are seeing a shift towards declaring epidemics first and counting cases later.

Tuesday, August 17, 2010

Ari Ne'eman at the IACC Meeting

As many of you are no doubt aware, earlier this year Ari Ne'eman was nominated to serve on the National Council on Disability. At the time, I said that I thought it was a bad idea. Then, out of the blue, his nomination was put on hold for some reason.

I hoped that the hold was because someone had come to their senses and realized that Mr. Ne'eman was not a good person to represent the needs of people with autism.  But my hopes were soon utterly crushed when not only was his nomination to the National Council approved, but he was also appointed to serve on the Interagency Autism Coordinating Committee (IACC).

Well, what's done is done and Mr. Ne'eman's appointments are going to run for a couple of years. Hopefully during that time he will be able to grow to become someone who truly represents the needs of everybody on the spectrum - including the silent majority who are unable to speak for themselves.

But given some recent events, I am not going to hold my breath.

As I was watching the videocast of the most recent IACC meeting, I ran into a prime example of exactly why Mr. Ne'eman is not qualified to serve on the IACC or the NCD. The transcript of the meeting is not yet available, but if you look at the video, starting at about 40:00 you can witness Mr. Ne'eman displaying his maturity.  Or, alternatively, you can read my transcription of the exchange below.

Just as background, at this point in the video, Michael Ganz, Ph.D. has just finished giving a presentation on the costs of autism in the United States. If you don't want to watch the presentation (it is interesting), let me just summarize it by saying autism = expensive.

Ari Ne'eman : Thank you. I appreciate your presenting on this in so far as you work can help improve access to services, I think we can support it. I want to sort of drill down into this concept of indirect costs you put forward connected to what I think you referred to in your presentation as the value of prevention. You know, I wonder if you couldn't speak to some of the ethical implications here. I mean, correct me if I am wrong but isn't what you are saying here essentially these people are expense, we have calculated exactly how expensive they are, now, let's save that money by preventing them from existing? How would you distinguish your views from the views from of, say, the eugenics movement of the 20th century which did a very similar thing.

Michael Ganz, Ph.D : I don't want to insult anybody but I think that's a ridiculous statement. The point of this work is to point out the lost opportunity costs associated with people who have a health condition that hopefully can be prevented and I am not meaning that the folks should be prevented from being born. I mean that they should be prevented from experiencing that condition. Just like there is tons of literature on the costs associated with depression, with breast cancer, with over active bladder, it doesn't mean we want to prevent people from being born who might have over active bladder, we just mean that's the cost the associated opportunity cost, those costs can be going to something else like playgrounds --

Ari Ne'eman : What about in the example of say downs syndrome that is the example in which you see very high rates of prenatal termination fetuses that test positive for downs syndrome. Now, according to your methodology, does that result in a net economic benefit for society. You know does that represent part of the value of prevention?

Michael Ganz, Ph.D : It might but I am not -- I really don't -- well let's point it this way that's not the perspective I am coming from, I am coming from the perspective a person is born, again with a condition and can we treat it and what would you save if you treated it. That's -- I think that reading too much into this from an ethical standpoint, certainly people are going to do that but that's not what I set out to do. I set out to do an accounting exercise --

Ari Ne'eman : Let me say it a different way...

(Thomas Insel, the director of the National Institute of Mental Health and Chair of the IACC interrupts at this point and steers the conversation back into grown up land).

If you watch the video, you can see Mr. Ne'eman ask - with a straight face - whether Mr. Ganz was supporting the idea of eugenics.   Simply suggesting that someone supports eugenics is insulting in the first place, but to ask that as a serious question in a professional environment like the IACC?

The question along is like walking up to a random person on the street and saying "Hi, I hear you want to murder unborn children".  That alone is bad enough, but consider if you did the exact same thing in the middle of an executive meeting at a large company.

I can think of only one word to describe this behavior - juvenile.  If anyone pulled this sort of crap in a professional environment, I have no doubt that they would be quickly voted off of the island.

Dr. Landis's notes are starting to look good in comparison.

Even if you ignore the whole absurd notion that anyone on the IACC would even suggest systematically aborting every child with autism, the question still makes no sense.  Mr. Ne'eman didn't ask someone who was working on a biomarker for autism, nor did he ask someone who was looking for prenatal signs of autism, nor did he even ask someone who was doing any sort of biological research - he asked someone who is basically economist.

Now, I know economist are guilty of doing a lot of things, but for some reason I highly doubt that developing a prenatal test for autism and then making everyone abort any child who failed the test is on their agenda.

I think Mr. Ganz said it best in in his initial response to the question when he basically said "I don't want to insult you but you are being ridiculous."

I second that idea.  Mr. Ne'eman, grow up.

Monday, August 16, 2010

Blaming Autism

Last week, I opined when talking about current events that autism is a casual factor in some deaths and that children with autism have more safety issues than "typical" children do.  These posts got a little bit of a response.

On the bright side, Harold Doherty from Facing Autism in New Brunswick agreed with me in that there are dangers inherent in having autism and Ginger Taylor from Adventures In Autism defended her site "Lives Lost to Autism" (the site that started the debate) by pointing out that research has actually shown that people with autism have an elevated death rate.

On the not so bright side, Astrid took my statements out to the woodshed not once, but twice while someone named Laura from Life in the House That Asperger Built brought out Spock to crush my illogical opinions.  They both has several problems with the idea that autism is culpable in some peoples deaths but, before I go into the details, I wanted to clear up a few basic misconceptions about what I wrote.

First, when I talk about "autism", I am talking about the conditions commonly known as autism as they are defined in the relevant medical manuals.  I am not, however, always talking about people who have autism.  These are two different concepts.  As I have said in the past, a person is a person, not a disability.

Second, if a person causes, either through direction action or negligence, the death of another person then they are responsible for the death.  Or, to put it simply, they are to blame.

Third, just because a person does cause another person to die does not mean that there weren't other factors involved. I do not think that most events are ever simple enough to only have one cause and just because one thing is "to blame" does not means that something else is not equally "to blame".  When you are talking about death, there is always more than enough blame to go around.

With that out of the way, I think the criticisms are as follows.  If I get these wrong, feel free to tell me where I am mistaken.

Laura said that it isn't the disability that kills children but rather neglect on the part of their caregivers.  If their caregivers had properly taken care of them, they would not have died.

While I agree in general, as I said above and elsewhere, that if a person shows actual neglect that they are responsible for the death, I have to strongly disagree with tone and implications.  As I talked about earlier, parents and caregivers often go to extraordinary lengths to protect their children but it only takes one moment of inattentiveness or one moment when your focus is elsewhere for a tragedy to happen.

I think it is long past the point where we should be automatically point the finger at the parents.  We didn't cause our children to have autism nor did our poor parenting skills and we are trying our damndest to help them, so enough with the guilt trips already.

Second, and probably more importantly, even when there is actual negligence, that does not mean that autism did not play a role in the death.  Let me be clear, that does not excuse the negligence - in my mind it actually makes it worse.  But it is important to acknowledge the fact that autism comes with additional risks.  I will expand as to why this is the case in a little bit.

Astrid pointed out that it isn't the disability that leads to problem but rather unsafe situations while Laura said that the lack of abilities that is part of autism can only lead to death in the presence of other circumstances.

On one level, I agree with what they are saying.  If you are standing in the middle of room doing absolutely nothing, a person with autism is no more likely to die than any other person would be.  The problem only comes in when you have things happening in the environment that interact with autism.

And that is exactly why part of blame belongs to autism.  Autism impairs a person's ability to understand their environment, both on a social level and on a physical level.  It is that impairment - an impairment that is part of the core of what autism is - combined with the environment that causes the problem.  If you removed the impairment, the situation might not be unsafe.

That does not mean that you ignore the situation or just shrug your shoulders and say "well, that's autism".  On the contrary, parents and caregivers need to be very aware of exactly what situations would pose a danger to their child and actively work to keep the child from harm.  But that extra step of precaution is not possible without first acknowledging the fact that autism is creating an extra risk.

An apt example here would be if someone drugged you and then left you wander out onto a busy highway where you were hit and killed by a car.  Is the car the only think to blame in your death or is the person that removed your ability to understand what you were doing also to blame?

A more appropriate example would be the children than wander away from home only to die from exposure.  Is it the weather that killed them or the lack of understanding of the environment caused by autism?  Or are you really going to always blame the parents for not keeping the kids safe (i.e. you should have put that fourth lock on the door)?

Perhaps an even more appropriate example would be the twelve year old boy with autism who was rescued from a fire only to break free from his rescuers and run straight back into the fire where he died.

It isn't always that situations are inherently unsafe but rather that situations are unsafe because of autism.

Astrid and Laura both said that autism is not an excuse for a parent murdering their child.

I agree completely, and said as much not too long ago.

Finally, Astrid said that blaming autism shifts the focus away from the concept of safety to the disability itself.  The focus should be on providing accommodations to make the world a safer place for people with the disability.

I think she is missing the point.  It is critical that parents and caretakers understand the increased risks that come along with a child having a diagnosis of autism.  If you don't understand that the child might not be able to properly understand their environment and may engage in behaviors that are not in their best interest, you will not be able to adequately keep them safe.

To make matters worse, you may not get a second, so sticking your head in the sand and pretending that the problem does not exist is only going to lead to more dangerous situations, not less.

It seems to me that critics like Laura and Astrid would rather pretend that autism doesn't carry greater risks while at the same time blaming the parents and caregivers for not providing better protection.  They can't have it both ways.

I think the overall problem with both critics is that they seem to feel that the condition known as autism is a part of their identity and they view any attack on it as an attack on them.  I don't really want to go into that whole debate now, so suffice it to say that if you choose to make a medical condition a part of your identity, you cannot complain when people accurately describe the condition.

Autism Increase Unexplained (Duh)

Wow, who would've thought, diagnostic changes alone can't account for the entire increase in the rates of autism.  There have been many of us saying this for a while now, but finally some of the more mainstream publications seem to be getting the idea.  From the New Scientist -

Autism explosion half explained, half still a mystery

Why have the numbers of autism diagnoses ballooned in recent decades? Researchers have long claimed that changes to the way the condition is diagnosed are the main cause. But now a series of a studies have shown that diagnostic changes alone cannot account for the increase. They suggest that other causes, perhaps environmental factors, are also contributing to the rise in cases.

"These studies give me the feeling that there must be a true increase in the number of children affected," says Tom Insel, director of the National Institute of Mental Health in Rockville, Maryland.

This analysis may still be a little lacking - such as when it blames older parents for a whooping 11% of the increase in autism because they produce more "genetic mutations" without being able to show how these mutations are causing autism.  But it is long past time for researchers to make a serious attempt at figuring out what is going on with autism.  

Saturday, August 14, 2010

Autism and Safety

As I talked about in my last post, autism can be a health hazard.  I don't want to dwell on such a morbid subject but this is a very important subject and ignoring it could be hazardous to your children's health.

Whether it is a young child with autism running back into a fire, wandering away from home and dying of the elements, or a parent snapping under the stress of a having a children with autism, autism has contributed to or caused the death of many people.

Of course, since we are talking about autism, there are a variety of opinions about whether autism "itself" (whatever that means) is what causes the health hazards or whether it is other factor that do.  And, as is normal in the autism world, you have the majority of parents on one side and the "autistics" and the neurodiverse parents on the other.  I can understand where the former are coming from, but the parents, those I just don't get.

But regardless of whether you think that autism is a health hazard, it is important to remember that autism causes safety issues for children and young adults.

I think that the basic safety issues might be hard for some people to fully understand if you do not have a young child with autism or have not experienced the problems first hand.  Many of these children simply do not understand and cannot navigate the dangers that "typical" children can.  They will run out the door, walk out in front of cars, jump in pools when they can't swim, and charge into any and every situation without any understanding or ability to understand the dangers.

They will continue to do this long after every "typical" child has learned to navigate these dangers.  If a parent isn't careful these behaviors, behaviors caused by autism, can be the death of their child.

With three children on the spectrum, we have had to do some remodeling of our house to deal with the danger.  We added bedrooms and moved doorways so that we have a set of bedrooms that can be gated off from the rest of the house.  So, every night, there are multiple child gates stopping the children from getting out of that area of the house and the exterior doors have locks, deadbolts, extra locks up high, and alarms to prevent our children from being able to leave the house undetected.  These measures are there for their protection and to keep them safe.

During the day, there is always someone watching the children to make sure that they don't get into a situation that would pose a threat to them and to make sure that they don't wander away.  Because if they wandered away, they would not be able to tell anyone who they are, where they live, or anything else about themselves.  In other words, they would be completely defenseless.

Going out into public posses other safety challenges as well.

The funny thing is that my children aren't actively trying to escape or wander and aren't little daredevils.  For the most part they are actually very well behaved little girls.  But there have been a few incidents where they have almost wandered away or gotten themselves into situations that would have been hazardous.  These incidents and situations were directly caused by a lack of understand of the environment and this lack of understanding is directly because of autism.

The risks are simply too great to ignore.

Thursday, August 12, 2010

Jabberwocky of the Day : Don't Speak Ill of Autism

A new blog/memorial site called Lives Lost to Autism was announced on Age of Autism yesterday. The new site is meant to "tell the stories of the precious lives cut short by autism".

While I understand why this site was created and why it is important to not overlook the problems that autism brings, I can honestly say that the site gives me the heebie-jeebies. I known that autism has caused many lives to be cut short but I don't really want a daily reminder of that fact.

However, be that as it may, this site has the potential to be an apt memorial of those who have passed.

But then, we have those who feel differently.  Those who feel that somehow this site is being unfair to autism itself. I am speaking of a response on Left Brain Right Brain entitled "Autism is not murderous" -
But the name ‘Lives lost to autism’, the strapline ‘For many, autism can be deadly.’ and most particularly the statement ‘This site tells the story of the precious lives cut short by autism.’ are very misleading. Blaming autism for murder is utterly misleading. Autism didn’t murder any of the children listed as murder victims – or the ones that haven’t been listed either.
The site seems to be set up and run by Ginger Taylor (left) who’s position on autism has grown more and more extreme over the years. It seems now she is happy to denigrate autism itself as a murderous entity.
That's right, the site is wrong because it unfairly criticizes autism the "entity". And here I was unaware that autism was it fact an entity -
1 a : being, existence; especially : independent, separate, or self-contained existence b : the existence of a thing as contrasted with its attributes
2 : something that has separate and distinct existence and objective or conceptual reality
I was under the impression that autism was a disease, disorder, or condition that people had, not some independent thing that had the person. I mean, if autism was an independent of separate thing that would mean it would have to somehow gain possession or infect someone before they could be said to "have" autism.  If autism were an infectious entity, that would go along way to explaining the increase in autism, wouldn't it?

But somehow I don't quite think that was what Kev meant.

Regardless, the suggestion that blaming a death on autism is somehow misleading or tarnishes autism's good name is just plain silly.  Autism is not a good thing and has in fact directly caused many deaths.

Let me put it this way, if someone dies as a direct result of being shot would you try to claim that it was the bullet and not the person pulling the trigger that is to blame?  In a similar fashion, autism robs people of abilities or facilities that they would normally be expected to have and it is this lack that can directly lead to death.

Autism can prevent children from understanding their environment and that lack of understanding can very easily be fatal. Autism can easily prevent people from being able to understand what effect their actions have on others and thus lead to their deaths. This likely happened in the case of Sky Walker - do you think he killed his mother or was it his autism that lead to her death?

I have seen many attempts to whitewash the spectrum but this one takes the cake.

Wednesday, August 11, 2010

The Pertussis Outbreak in California (Updated)

As I talked about a few weeks back, California has been experiencing an outbreak of whooping cough (pertussis) over the past two or three months.  For a while there were a lot of articles and blog posts about how this outbreak was the fault of the "anti-vaxers" but fortunately these articles have mostly died down.

However, these articles and posts were replaced by ones calling this the "worst outbreak in 50 years".

As I have pointed out a few times, there are likely many reasons why we are seeing increases in the number of cases. The reasons range from  problems with the vaccine not working as well as it could to the fact that the vaccine only lasts for about a decade before it no longer provides protection to the fact that the outbreak in California might be occurring in groups that don't have good access to health care.

Regardless of the reasons, an epidemic of whooping cough has been declared in California. But we are really in the midst of the "worst outbreak in 50 years" or is something else going on?

To answer that question, I looked at the numbers published by the CDC in the past several years to see how the current year compares to previous years. I took the total number of provisional pertussis cases reported week by week for the first 7 months of the year for 2004, 2005, 2009, and 2010. I selected 2005 because that was the year of the last whooping cough outbreak and 2004 and 2009 are included as comparison points.

I think it is worth noting that the numbers that the CDC publishes can be different that the numbers that you here from other sources. For example, one source from several weeks back says that as of June 30th there were 1,337 cases reported in California yet the CDC's most recent published data only shows 809. The differences between the numbers could be caused by a number of factors such as how a case is confirmed (some tests are more accurate than others) or any delay in reporting cases to the CDC.  But I don't think the differences are significant here because it is the trends that I am looking at, not the absolute numbers.

So, without further ado, first up we have California.

As you can see on the chart above, there are clearly more cases at this point in the year than in any of the prior years included. There is no doubt that California is having a epidemic of whooping cough. However, the total number of cases have basically been flat for the past 3 weeks, so perhaps the outbreak is already winding down. Only time will tell for certain.

But that is California, what about the country as a whole?

This chart tell a different story. For the country as a whole, we are experiencing a milder year this year than the other years included. The year to date numbers are slightly below the numbers from 2004 and well below the numbers for 2005 and 2009. So when you look at the entire country, we are clearly not having the worst year in 50 years.

So what does the state by state picture look like? The following chart is showing the total number of cases for 2009 and 2010 on a state level as of July 31st.

It may be a little hard to see on the chart (click on it to see a larger version) but more than half of the states are showing less cases than last year while only a few are showing more. This tells me that while there are areas of the country that are having outbreaks the rest of the country is doing better than it did last year.

Overall, the picture is mixed.  There are a few states that are having outbreaks but the rest of the country is doing pretty good.  Only time will tell what the final numbers of this year are but it isn't shaping up to be the worst in 50 years.

P.S. If you live in an area that is having an outbreak, come into close contact with young children, and it has been over ten years since your last shot, you may want to talk to your doctor about getting one.

If figures.  The data stays basically flat for three weeks so I think it is safe to write about this topic and then the CDC goes and publishes a new data point that changes what I just got done saying.

The new figures for the week ending Aug 7th show a massive increase in the total number of cases in California.  The prior weeks total for California was 809 but the new total number is 1,964, a staggering increase.  However, the number of new cases for the current week was only 17.

I guess that most of these cases were for past weeks and just now percolated into the CDC's numbers but I have to admit I am a little confused.  The definitive test for whooping cough takes about a week to get results back and the data for California has been flat for the past three weeks.  So either there is a backlog in testing, a significant delay in reporting to the CDC, or something else going on with the numbers.

The new total number for the US also jumped from 7,781 to 9,412, - a change of 1,631 - with a weekly change of 210.  Most of this total change was driven by the California change (1,155) and by a jump in North Caroline from 0 to 123 cases.

The new number means that the total number of cases in the US are now above 2004 and 2009 but still below 2005.

On the state by state level, the picture does not change too much.  Well over half of states are still showing a decrease from last year and only two more states switched from basically unchanged to showing a noticeable increase.

Tuesday, August 10, 2010

Does John Elder Robison Understand Autism Prevalence?

John Elder Robison is a "bestselling author, autism advocate, and founder and owner of J E Robison Service Company of Springfield, Massachusetts" and serves on the the scientific advisory board of Autism Speaks.

Mr Robison is in a position to help decide what research Autism Speaks should fund, so I would expect him to be quite knowledgeable when it comes to the science of autism. Yet from some of his recent comments, I am not sure that he grasps the science behind one of the fundamental questions about autism - is autism increasing?

Below is something that Mr. Robison recently wrote about the increase in autism as part of a larger conversation. I am not going to address the main points of the discussion because Jonathan already did a good job of that at Autism's Gadfly. Instead, I want to focus on his statements about the apparent increase in the rates of autism -
The 600% thing may be misleading, but it's still real. Is some of it caused by more inclusive standards in the new DSM? Sure. Is some caused by much greater public awareness? Sure. Is some caused by increases in certain kinds of autism . . . probably. There have not been any studies to clarify this point because there is no data on the prevalence of certain kinds of autism in years past - there's only data on the whole spectrum. It's very hard to explain the reason for the increase and no one has figured out a way to determine if certain conditions like childhood disintegrative disorder are increasing, or just more visible. The same can be said for Asperger's.
The 600% refers to the apparent increase in autism rates over the past decade or so. Now, I have to give Mr. Robison credit for actually admitting that "certain types of autism" are "probably" increasing. But all of the credit goes bye-bye when he says (presumably with a straight face), that increases in conditions like childhood disintegrative disorder might be responsible for part of the increase and that there is no data on the breakdown of the spectrum.

For those of you who don't know, childhood disintegrative disorder (CDD) is a very rare condition that is one of the five conditions that together make up the pervasive developmental disorders - more commonly known as the autism spectrum.  And while it is true that children with CDD do look a lot like children with autism, there are some very significant differences.  Children with CDD have an extended period of "normal" development (at least 2 but no longer than 10 years) before undergoing a very significant (and most times very rapid) regression where previously acquired social, communication, and motor skills are lost.  After the regression, these children do show the same behaviors as other forms of autism but, unlike other forms of autism, once skills are lost, they are typically never regained.

To put it bluntly, when your child goes from being a bright talkative five year old to being a child with an intellectual disabilty who no longer talks, looses motor skills, and no longer has bladder control and stays that way for the rest of their life, that would be CDD.

CDD can make even lower functioning autism look good by comparison.

The strange thing is that it isn't like we have no idea how how (un)common CDD is. All the way back in 2002, there was a review article published that cited prevalence estimates from 1966 onward and came up with a figure of about 1.7 per 100,000 for CDD.  Compare that to the recent CDC figure of about 910 per 100,000 for all types of autism.

Even if CDD has seen the same massive increases that other forms of autism did over the past decade, we are still only talking about 10 per 100,000 compared to 910 per 100,000.  But I have not been able to find any published work that even suggests that the rate of CDD could have increased this much and, as recently as 2009, the 1.7 per 100,000 figure is still being used.

So, in other words, if you ignore all of the data that has been published on the subject and make some huge leaps of faith, you could possibly conclude that about 1% of all current autism cases are CDD.  However, a much more realistic scenario is that CDD hasn't increased so drastically and makes up less than 0.5% of all autism cases.

In either case, it is highly unlikely that an increase in CDD is a major (or even minor) factor in the 600% increase in autism.

Which leads into the second problem with what Mr. Robison said - that we don't have a clear picture of what types of autism are increasing.  If you even do a quick search, you can turn up several places where breakdowns have been done. Take for example this study from 2009 that clearly gives a breakdown between the types of autism -
This article reviews the results of 43 studies published since 1966 that provided estimates for the prevalence of pervasive developmental disorders (PDDs), including autistic disorder, Asperger disorder, PDD not otherwise specified, and childhood disintegrative disorder. The prevalence of autistic disorder has increased in recent surveys and current estimates of prevalence are around 20/10,000, whereas the prevalence for PDD not otherwise specified is around 30/10,000 in recent surveys. Prevalence of Asperger disorder is much lower than that for autistic disorder and childhood disintegrative disorder is a very rare disorder with a prevalence of about 2/100,000. Combined all together, recent studies that have examined the whole spectrum of PDDs have consistently provided estimates in the 60-70/10,000 range, making PDD one of the most frequent childhood neurodevelopmental disorders.
Notice how the two types of autism that Mr. Robison called out - CDD and Asperger's - are both listed as being rare relative to a overall rate of 60-70 per 10,000.  The bulk of the cases of autism in this review are either PDD-NOS or classic autism.

The current rate for the entire spectrum is about 90 per 10,000 and, as the CDC said in its most recent report, the increase from the earlier 60 per 10,000 isn't all in the conditions like Aspergers.  As a matter of fact, the increases are somewhat spread out but the classic autism category might show a greater increases than the other conditions -
The widening of diagnostic criteria over time to include persons who are more mildly affected has been suggested frequently as a factor influencing increases in ASD prevalence. (snip) However, in this analysis, a clear shift was not identified from 2002 to 2006 in the use of the more broadly defined ASD diagnoses. In fact, for several sites, increases were recorded in the use by community professionals of the autism diagnosis rather than the other ASD diagnoses. Another indicator of identifying children on the more mild end of the spectrum would be a differential increase in prevalence among children with borderline or average to above-average cognitive functioning. Although the overall pattern among these higher cognitive functioning groups indicated substantial increases in ASD prevalence, increases also were observed among children with cognitive impairment. Increases varied across sites, and a clear pattern did not emerge that would permit attributing the majority of the increase in ASD prevalence to the use of the broader ASD spectrum.
So for Mr. Robison to suggest that any significant part of the increase in autism is due to CDD or that we have absolutely no idea what type of autism is increasing is disingenuous at best and intellectually dishonest at worst.  What is he doing serving on the scientific committee of Autism Speaks if he can't even get the basic facts right?

Friday, August 6, 2010

It Doesn't Matter Where They Came From

Probably the most important unanswered question when it comes to autism is whether there is a real increase in the number of people with autism or whether the increase is an artificial one that is being caused by changing definitions and social factors.  The answer to this single question has the potential to completely change how we look at autism.

However, at the same time, I would suggest that the answer to this question is quickly becoming a moot point as the needs of the ever increasing number of autistic children are quickly outpacing the services that are available for them.  The State of Texas seems to be learning this lesson the hard way -
Causes aside, autism’s effects are indisputably profound on students, parents and teachers. Nearly 30,000 of the 4.8 million students in Texas schools are classified as autistic, according to TEA data. Lawmakers have taken note of the growing autistic population and the increasing volume of complaints from frustrated parents. And they are looking to new programs and to other states for potential solutions.
Many Texas teachers have limited knowledge and training to teach students with autism. With more and more autistic students in regular classrooms, many parents say teachers must be better prepared.
The article mentions this 30,000 number is a 400% increase over the past decade but leaves out the fact that  the situation is only going to get worse.  If the most recent figures from the AAP and CDC (1 in 110) are to be believed, the number of children with autism in Texas should still be another 50% higher - almost 45,000 children.

If the rate of autism isn't increasing, then I have to wonder what these extra 22,000 children were called before being lumped in with the autism group and how their needs were being met.  If the children - and their needs - have always been there, why isn't the education system in Texas prepared to deal with them?

But regardless, it doesn't really matter where these children came from, what matters is that they are here now.

Thursday, August 5, 2010

New Study About Leaky Gut and Restricted Diets


Alterations of the Intestinal Barrier in Patients With Autism Spectrum Disorders and in Their First-degree Relatives. 

de Magistris L, Familiari V, Pascotto A, Sapone A, Frolli A, Iardino P, Carteni M, De Rosa M, Francavilla R, Riegler G, Militerni R, Bravaccio C.

OBJECTIVES:: Intestinal permeability (IPT) was investigated in patients with autism as well as in their first-degree relatives to investigate leaky gut hypothesis. Faecal calprotectin (FC) was also measured in patients with autism, either with or without gastrointestinal symptoms, and in their first-degree relatives.

PATIENTS AND METHODS:: IPT results, assessed by means of the lactulose/mannitol test, were compared with adult and child controls and with FC values. 

RESULTS:: A high percentage of abnormal IPT values were found among patients with autism (36.7%) and their relatives (21.2%) compared with normal subjects (4.8%). Patients with autism on a reported gluten-casein-free diet had significantly lower IPT values compared with those who were on an unrestricted diet and controls. Gastrointestinal symptoms were present in 46.7% of children with autism: constipation (45.5%), diarrhoea (34.1%), and others (alternating diarrhoea/constipation, abdominal pain, etc: 15.9%). FC was elevated in 24.4% of patients with autism and in 11.6% of their relatives; it was not, however, correlated with abnormal IPT values. 

CONCLUSIONS:: The results obtained support the leaky gut hypothesis and indicate that measuring IPT could help to identify a subgroup of patients with autism who could benefit from a gluten-free diet. The IPT alterations found in first-degree relatives suggest the presence of an intestinal (tight-junction linked) hereditary factor in the families of subjects with autism.

Wednesday, August 4, 2010

Jabberwocky of the Day : Sophomoricus

Flickr photo by Lebatihem
Did you know that my coverage of medical studies is, in the words of Sophomoricus (aka Socrates of the New Republic), "Thermonuclear-Grade Bullshit"?

I don't normally read anything written at the New Republic (I like my humor more childish and less sophomoric) but I happened to notice that he had this to say concerning my recent post on trace and toxic elements -
Continuing the Heavy Metal theme, Autism Jabbawocky continues to spout tendentious, half-understood, mis-remembered junk, in ever more desperate attempts to catch the eye of Harold Doherty, in the hope of an invitation to join him on a horse riding holiday in Wyoming
He went on to quote the part of my post where I talked about how my children have some of the deficiencies shown in the study -
However, it is my feeling that these results do reflect the reality of what can happen in certain children with autism. As a case in point, all of my own children show an elevated (almost toxic) level of copper, a low level of zinc (2 of 3 were zinc deficient), and low levels of selenium
So far we have just another person who doesn't take the time to actually read and understand what they are attempting to mock. It is sad but not unusual enough to comment on. But the funny part comes next, in the comments section, where Sophomoricus announces that evidence based medicine should not be based on evidence but rather the popularity of the idea.

I started the comment thread with -
I am glad you find my children's nutritional problems amusing.
OK, so it wasn't the best opening. I get annoyed when people think nutritional problems should be mocked. Sophomoricus responded by saying -
The thermonuclear-grade bullshit is the issue at question, not your children.
to which I said -
Then you must not have read the text that you quoted where I said my children were zinc deficient, had low levels of selenium, and had too high levels of copper.
Do you understand what these substances do inside the body and what the developmental implications are? From your flippant tone, I don't think you do. So here's an easy one to get you started zinc deficiency -
So what is the bullshit here - your lack of understanding of biology or your irrational disbelief of scientific evidence that these trace elements are out of balance in some children who have autism?
And then we get to the funny response -
Look dude - if your graph had even the slightest chance (1 in 100) of holding true - every autism research group on the globe would be chasing the prize.
I have absolutely no doubt levels of all kind of things are out of kilter in Autistics. I'm too busy experiencing the Joy of Autism to further engage with you at this poit. 'cuse me while I go get chelated.
There you have it, a scientific study isn't valid unless it wins awards for popularity. Here, I was laboring under the apparently false impression that a study's data and interpretation of the data was the important part. But no, it is the popularity of the idea that matters, not the data. That would explain why the mainly genetic model of autism is still talked about even though no one has managed to find any significant genetic links to autism as a whole.

The bonus joke here has to do with chelation - does anyone know what one of the accepted medical treatments is for people who have toxic levels of lead or copper?