Wednesday, December 30, 2009

Study : Omega 3 and Sensory Overload


According to research published this month by the American Psychological Association, Omega 3 fatty acids may help people avoid sensory overload.

In the researchers are correct, Omega 3 could help with sensorimotor gating, which is a "behavioural trait in humans and animals that reflects the ability to filter out extraneous stimuli and to process information that comes in rapid succession."

Or to put it another way, this is the process that your brain uses to filter out extra sensory input so that you can you process information quickly and don't become overwhelmed by too much sensory input at once.

The title of this study is "Deficit in prepulse inhibition in mice caused by dietary n-3 fatty acid deficiency", which, if you ask me, is a mouthful.  The study is not open access, but there is a good write up of it over at Science Direct.

The details of this study are somewhat over my head, but in general terms the researchers divided a group of  pregnant mice into several groups and fed them different diets.  Some of the diets were deficient in omega 3 fatty acids while others had a diet enriched with types of omega 3.  The mice's offspring were kept on the same diet after they were weaned and they their auditory sensorimotor gating was measured.  The results showed that the mice who had a a diet with added omega 3 fatty accids did substantially better in sensorimotor gating than those who were on a diet low or deficient in Omega 3.

I am glossing over a lot of the details, but the general idea is that having enough Omega 3 in your diet might  help a person process sensory information better.

So, what does this have to do with autism?  If you have been around people with autism or have spent some time reading about it, you should be aware that autism and sensory issues seem to go together.  There is also evidence that children and adults with autism have problems with sensorimotor gating.

Prior research has shown that omega 3 fatty acids are beneficial and may help with irritability and speech problems and now the current study suggests that omega 3 could help with sensory issues.

I think that bottom line is that it would be a good idea to make sure that children with autism get enough omega 3 in their diet.

Tuesday, December 29, 2009

Maybe the CDC finally is getting the point?

The CDC is updating the information on its site about autism and it looks like that are (finally) getting serious about looking for non-genetic causes of autism.  From the updated information on their site (added emphasis is mine)  -
Understanding Risk Factors and Causes
We do not know all of the causes of ASDs. However, we have learned that there are likely many causes for multiple types of ASDs. There may be many different factors that make a child more likely to have an ASD, including environmental, biologic and genetic factors.
What Research Tells Us
  • Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD. Studies have shown that: 
    • Among identical twins, if one child has an ASD, then the other will be affected about 60-96% of the time.
    • In non-identical twins, if one child has an ASD, then the other is affected about 0-24% of the time.
    • Parents who have a child with an ASD have a 2%–8% chance of having a second child who is also affected. 
  • ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic, neurologic, or metabolic disorder, such as: 
    • Fragile X syndrome
    • Tuberous sclerosis
    • Down syndrome
    • Other chromosomal disorders 
  • Some harmful drugs taken during pregnancy also have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid. 
  • We know that the once common belief that poor parenting practices cause ASDs is not true. 
  • There is some evidence that the critical period for developing ASDs occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth.
So there you have it - the CDC has quietly shifted its position and seems ready to look into the biological and environmental side of autism.

Its about damn time.

Friday, December 25, 2009

Happy Holidays



Wishing you and your family and safe and happy holiday season.
(and may autism not wreak havoc on your x-mas plans)

Saturday, December 19, 2009

Autism Rising : Its Groundhog Day

I read the latest CDC report on autism prevalence for 2006 and 2004 and I am beginning to feel that I am trapped in that movie Groundhog Day.  You know the one, where Bill Murray is doomed to repeat the same day over and over and over again until he gets it right.  This report from the CDC is like that - these same lines have been repeated over and over again for over a decade.
In 2006, on average, approximately 1% or one child in every 110 in the 11 ADDM sites was classified as having an ASD (approximate range: 1:80--1:240 children [males: 1:70; females: 1:315]). The average prevalence of ASDs identified among children aged 8 years increased 57% in 10 sites from the 2002 to the 2006 ADDM surveillance year. Although improved ascertainment accounts for some of the prevalence increases documented in the ADDM sites, a true increase in the risk for children to develop ASD symptoms cannot be ruled out.
Looks strangely like the lines that we have been hearing for years now.  Yes, autism is once again more common than thought, but no, we don't know why that is.  We think it is because we are getting better at finding it but we cannot rule out a true increase.

I love that phrase - "cannot rule out".  That phrasing makes you believe that there is strong evidence that shows that autism is not rising but, to be overly cautious, they will still admit that it might be possible that it is more common than it used to be.

Like the movie Groundhog Day, I think we will be seeing these lines again when we hear about the next revision in two years.  I am going to go out on a limb here, but I expect the number that we will hear next is 1 in 80.

But enough of me rambling on about this, I think I have made my opinion clear before.  Instead, I am going to use some pretty pictures to demonstrate my point.  The numbers on the following charts are from the CDC's data for 2000, 2002, 2004, 2006 and the National Survey of Children's Health (NSCH).

First up is the prevalence of autism in 8 year olds from the CDC and NSCH from 2000 to 2007.  The last point is from the 8 year olds from the 2007 NSCH survey and is likely a little high.


The next chart is the approximate year over year change in the autism prevalence from the above chart.  If you look at the average percent change, you will see that the number of 8 year olds with autism is growing about 10% per year.


The next series of charts are from the CDC's data for 2000,2002, 2004, and 2006.  For each of the states that had data for at least 2 years I charted the prevalence per 10,000.

















Anyone see a pattern?

Thursday, December 17, 2009

The CDC has an important decision to make

The CDC is widely expected to release its long overdue results from its Autism and Developmental Disabilities Monitoring (ADDM) Network tomorrow that will tell us, once again, that autism is far more common that was thought just 2 years ago.  If my understanding is correct, tomorrow we will know how common autism is in children that were 8 years old in 2004.  Or to put it another way, we will finally have the answer to how many children born 13 years ago (in 1996) had a diagnosis five years ago.  I don't know about you, but I am more interested in how many children being born today will go onto have a diagnosis, but I expect that we will have to wait until 2022 to get that answer.

With the release of this new data point, the CDC is likely to be moving the official autism number 50% higher - from 1 in 150 to 1 in 100.  That means that the prevalence of autism would have jumped 50% between children born in 1994 and 1996.

As a result of this announcement, the CDC is going to have to make an important decision.

You might be tempted to think that this decision would revolve around how to tackle this ever growing problem.  But then you would be wrong, we already know that the increase in the autism number is due to the fact that we are all now (or were in 2004) far more aware of autism, doctors are better at spotting it, and the parent's are jumping at the chance to have their children labeled as autistic to tap into all of those great services available.

Then what is the important decision?  Simple, take a look at the following chart from CDC's autism page



Now ask yourself, do you think that the CDC is going to add another smiling child to the chart to reflect our new awareness of autism?  I think that would be the least they could do to acknowledge all of the hard work that the medical community has done to make us all so aware of autism.

I guess we will find out shortly.

Edited to add -

The CDC did indeed release new data today for 2004 and 2006.  The new "official" number is 1 in 110 which marks the four straight upwards revision in the autism rate.  In a related note, the CDC did make a decision concerning the children in the chart - they were removed altogether.

I guess this upwards revision is nothing to smile about.

Monday, December 7, 2009

Autism Advocates Wanted


Wanted 
Autism self-advocates who normally spend their days attacking parents for helping their children who suffer from autism.

Job Description
As an autism advocate, you will have the opportunity to lead the fight against the prejudices that stop people with autism from reaching their full potential.  You will have a challenging time dealing with attitudes like this "question" posted at experience project -
What is less fake, autism or ADHD?
First world 'illnesses' for a lazy, good for nothing generation.
The world is full of people who believe that autism is nothing more than laziness or bad parenting.  The person who posted this question, thelone82, is apparently a teacher of some sort who would presumably have a hand is shaping the attitudes of future generations.

As a autism advocate, it is your responsibility to help educate people like this that autism is a real disorder - one that can make life challenging for all of those who are affected.  Whether you believe that autism is a disorder or  just a difference, it is important to help people understand the challenges faced by people with autism.

Benefits
You will make the world a better place for all people who suffer from autism.

To Apply
Click on the link and go to the experience project to submit your own answer to this absurd question.

Sunday, December 6, 2009

Denialism or Realism?


Vaccines are one of the greatest medical accomplishment of past century and are perfectly safe .... or they are responsible for causing an epidemic of autism.  Most people stand on one side or the other in this debate with very few in the middle.

The reality of the situation is not so cut and dry.  Vaccines are a life saving invention that are mostly safe and, at the same time, can (and do) cause side effects.  The side effects run the gamut from the benign injection site swelling to the more serious conditions like Guillain-BarrĂ© syndrome right up to (in rare circumstances) very serious ones like death.

This situation is not anything out of the ordinary - almost everything in life involves some sort of trade off between risks and rewards.   I would have to say that most people are willing to accept risks when they understand what they are.  Take for example the fact that millions choose to get behind the wheel of the car every single day even though tens of thousands die each year in fatal car crashes.  People know they there is a chance of serious injury or death, but they are willing to accept the risks.   I believe the part of the reason for this is that the risks are openly acknowledged - when you get behind the wheel of a car you know what to expect.

The problem with vaccines is that an honest dialog about risks and rewards is all but impossible.  The current party line by the medical community and the media is that vaccines are perfectly safe and effective but any rational person knows that statement is not completely true.  I don't know about you, but I get very tired of people saying things that they know are not the true.  Yes, vaccines are (mostly) safe but, at the same time, they have to be honest about the reality of the situation and not deny the risks.

As a case in point, look at author Michael Specter.  Mr Specter wrote a book called Denialism that is about "How irrational thinking hinders scientific progress, harms the planet, and threatens our lifes". I would agree with the basic premise here - too often people are irrational about important subjects and don't take the time to understand what it is that they are talking about.  Mr. Specter proved this himself on a recent appearance on The Daily Show where he made the following statement (at about 1:00 in the video) -
There is flu virus going around that half of americans adults say they won't vaccinate themselves or their children against.  62 million people have received this vaccination and zero people have been shown to have been killed or seriously injured.  So zero - 62 milllion, thousands dead without the vaccination, it doesn't seem like a difficult calculation to do.
This is a perfect example of skewing reality for the sake of proving a point.  Mr Specter is correct - this isn't a difficult calculation.  What I have a hard time understanding is why he exaggerated his numbers and denied the risks involved with the H1N1 shot.

Lets start with the assertion that 62 million people have been vaccinated against H1N1.  A quick check at the CDC shows that number is wrong -
During October 5--November 20, a total of 46.2 million doses of H1N1 vaccines (11.3 million LAMV and 34.9 million MIV doses) and 98.9 million doses of seasonal influenza vaccines were distributed to U.S states and territories
The 46.2 million is the number of doses - not the number of people who received the vaccine.  Keep in mind that for some groups (children), the recommendations call for 2 doses of the vaccine.  And I would assume that there are still some vaccine doses that have not been administered yet.

As a result, I would guess that a more realistic number of vaccinated people would be 40 million.  But for the sake of argument, lets assume for a moment that a full sixty two million people have been vaccinated against H1N1. Would that have mean that thousands of lives were saved?

To answer this question, we first have to know how common the flu is and then what the mortality rate is.  According to estimates from CDC, around 7 percent of the population is expected to catch the flu and approximately 18 out of every 100,000 was expected to die from the flu or complications from the flu.

The next question to ask is how effective the flu vaccine is at protecting against the flu.  There are no real figures available for the H1N1 vaccine but the regular flu vaccine is though to be 70 to 80 percent effective (when it matches the circulating strain of the flu).  For the sake of argument, lets assume that 75 percent of the people would have been protected.

Putting all of these numbers together - out of the 62 million, about 4.5 million people would be expected to catch the flu.  Out of that group about 800 people would have been expected to die.  Now assuming that the vaccine would have prevented 75 percent of these cases, we are left with about six hundred lives saved.

While it would be a good thing to save six hundred lives, six hundred is much less than the "thousands" claimed by Mr. Specter.  And when you adjust the sixty two down to the more likely 40, what you would find is the number saved would be under 400.

To put these numbers in perspective, the CDC puts the (confirmed) death toll for all types of flu this season (Aug 30 - Nov 28th) stands at 1,336.  If you use the same estimates figures from above, you would find that the confirmed death toll would likely be 250 higher if people were not vaccinated.

As for the second claim, the one that zero people have been shown to have had a serious reaction to the vaccine, another trip to the CDC puts that claim to rest -
Through November 24, VAERS received 3,783 reports of adverse events after receipt of H1N1 vaccine, of which 204 were categorized as serious, and 4,672 reports after receipt of seasonal influenza vaccines, of which 283 were serious. [Snip]
VAERS received 13 reports of deaths occurring after receipt of H1N1 vaccine; three deaths occurred after receipt of LAMV and 10 after receipt of MIV (Table 2). In nine of these deaths, significant underlying illness (including illness that might be indication for vaccination) was present; one death resulted from a motor vehicle crash, and the remaining three deaths await review of final autopsy results or death certificates by CDC.
These numbers are very rough and just because something was reported to VAERS doesn't mean it was an adverse reaction to the vaccine.  But, I think it is reasonable to assume that a good number of these adverse effects were actually related to the vaccine and that puts the figure well above zero.

If Mr. Specter had limited his claims to the facts, his point would be better received. Perhaps he could have said hundreds of lives were saved and mostly mild side effects have been seen.  But whatever the reason, he did not stick to the facts - he exaggerated the rewards and denied the risks.

This approach is all too common when talking about vaccines and therein lies the reason that the autism-vaccine wars aren't going to end anytime soon.

Monday, November 23, 2009

The Environment and ADHD

A new study was published in Pediatrics today that deals with one of the other major childhood disorders, ADHD.  According the this study, a child is more likely to develop ADHD if they have prenatal exposure or childhood exposure to lead.  I have not read the study yet, but from the press it is getting it seems this is a result is going to be an important one -

Association of Tobacco and Lead Exposures With Attention-Deficit/Hyperactivity Disorder
METHODS Data are from the 2001–2004 National Health and Nutrition Examination Survey, a cross-sectional, nationally representative sample of the US population. Participants were 8 to 15 years of age (N = 2588). Prenatal tobacco exposure was measured by report of maternal cigarette use during pregnancy. Lead exposure was assessed by using current blood lead levels. The Diagnostic Interview Schedule for Children was used to ascertain the presence of ADHD in the past year, on the basis of Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, criteria.
RESULTS A total of 8.7% (95% confidence interval [CI]: 7.3%–10.1%) of children met criteria for ADHD. Prenatal tobacco exposure (adjusted odds ratio [aOR]: 2.4 [95% CI: 1.5–3.7]) and higher current blood lead concentrations (aOR for third versus first tertile: 2.3 [95% CI: 1.5–3.8]) were independently associated with ADHD. Compared with children with neither exposure, children with both exposures (prenatal tobacco exposure and third-tertile lead levels) had an even greater risk of ADHD (aOR: 8.1 [95% CI: 3.5–18.7]) than would be expected if the independent risks were multiplied (tobacco-lead exposure interaction term, P < .001).
CONCLUSIONS Prenatal tobacco and childhood lead exposures are associated with ADHD in US children, especially among those with both exposures. Reduction of these common toxicant exposures may be an important avenue for ADHD prevention.
Edited to add : Here is a good write up of this study.

Alternative Autism Treatments and Mad Cow


Flickr Photo by
Twenty Questions

The Chicago Tribune has yet another article today attacking the use of alternative medicine in treating autism.  While the journalists do have some valid points, the general tone of the articles are troubling.  There are alternative autism treatments that do have value and can be effective and lumping all alternative treatments into the junk category is simply dishonest.

To illustrate what I am talking about, I would like to (unfairly) highlight one passage from one of today's articles -
Intravenous immunoglobulin, or IVIG, consists of pooled antibodies separated from the plasma of multiple donors. Its serious side effects run from fevers and headaches to anaphylactic shock and meningitis. Blood is screened, but there is still a remote risk of contracting some diseases, including "mad cow" disease.
So, from this you would infer that IVIG is a dangerous procedure - one that could give you some horrible disease like "mad cow", right?

Wrong.

I cannot find a single documented case of anyone ever contracting "mad cow" from IVIG.  As a matter of fact, the blood supplies used for IVIG are very well screened to prevent this sort of thing from happening -
Being a human product made from blood donations by many people, IVIG can transmit disease. IVIG available in the United States is very carefully screened to be free of all known transmissible diseases, including HIV, hepatitis, malaria, syphilis, and many, many others. However, as with blood transfusions, there is always a risk that the product contains an infection that has not yet been recognized -- either because it is a previously unknown disease or because a donor's infection was so early that his or her blood gave no clues.
To put this in perspective, American blood products are the safest in the world. Very, very few people have every gotten an infection from IVIG. However, in the past 30 years, IVIG has been temporarily removed from the market three times -- each time to test it for a newly recognized disease (HIV, hepatitis C, "mad-cow disease") that had not been excluded before the IVIG had been released to the public. In fact, IVIG did not carry these diseases and no one actually got sick because of the having received IVIG. However, no one can guarantee that a new disease will not appear tomorrow that will not have been yet tested for.
Don't take my word for it, look into the safety of IVIG for yourself.  And if you are thinking of using a treatment like this on your child, you should most definitely research it yourself..

This is a perfect example of what is wrong with this sort of reporting.  Reasonable people can disagree about whether a particular treatment, such as IVIG, is appropriate, for treating autism.  But when you bring this sort of sensationalism into the picture - such as statements implying that IVIG is going to give your child mad cow - all you are left with is nonsense.

Saturday, November 21, 2009

Dr Offit may not like basements


Flickr Photo from nic0
I am starting to think that Dr Offit doesn't like basements.   That must be the reason why Dr Offit doesn't  like to publisize his relationship with the Autism Science Foundation (ASF).

You would think that it is a match made in heaven.  Dr Offit knows that there is no relationship between vaccines and autism and the entire mission of the Autism Science Foundation is to fund all autism research except that which has anything to do with vaccines.  And as a matter of fact, Dr Offit is on the board of directors for the Foundation.

Yet Dr Offit doesn't seem to like to talk about the Foundation that he helps direct.  If you look at his recent press (and he does seem to like his publicity) such as Newsweek, Wired, Pediatric SuperSite, New York Times, or the Op-ed page of the New York Times  you won't find any mention of a relationship.  If you look at the resume on his site, it isn't mentioned either.

There even isn't any mention on his Wikipedia page.

I have no idea why Dr Offit doesn't like to talk about his relationship with the Autism Science Foundation.  This is the organization that hopes to one day replace Autism Speaks as the premier autism organization so you would think that the he would do whatever he could to help its mission.  About the only thing that I could think of is the Foundation is run out of Allison Singer's basement and Dr. Offit must not like basements.

After all, the good doctor is very concerned about the welfare of children who have autism and spends much of his time treating them and trying to help them, right?  Oh wait, I must be thinking of someone else.  Dr. Offit doesn't have anything to do with autism other than to say that vaccines didn't cause it.

Why is he on the board of directors of the Autism Science Foundation again?

Wednesday, November 18, 2009

Newsweek panders to Dr. Offit


Dr. Offit has written a short blurb for Newsweek's Top 10 list of "Most Overblown Fears" of the decade.  It is filled, as would be expected, with half truths and distortions.  And of course, like most major media outlets, Newsweek has failed to mention the fact that Dr. Offit has made a fortune from his patent on the Rotateq vaccine.  So, if you care to read yet another version of the classic "asked and answered" line, have at it.

For me, there are two lines from the piece that stand out.  The first is -
As is true with most pseudoscience, hypotheses shift, eventually settling on one that isn’t testable and, therefore, can never be proven wrong
This idea that "shifting hypotheses" is somehow unscientific is completely absurd on its face.  The bedrock of modern science is the scientific method where the whole idea is that you come up with a hypothesis, test it, and if doesn't pan out you come up with a new hypothesis and test that one.  Lather, rinse, repeat as needed.

Yet coming up with an alternative hypothesis to fit the available facts is somehow pseudoscience?

Anyway, the second line is -
The tragedy is, given all we now know about the neurological basis of autism, all three of these hypotheses had no chance of bearing fruit.
Apparently Dr Offit knows something that the rest of us don't because, as far as I am aware, the amount we "know" about the physiological basis of autism amounts to almost nothing.

We don't "know" what causes autism, we don't know how autism effects the brain, we don't know the biological basis of autism, we don't have any sort of biological marker for autism, nor do we even know what autism is.  So how exactly can we say that there is "no chance" of any theory bearing fruit when we don't have the slightest clue what we are even talking about?

I expected this sort of nonsense from Dr. Offit but I had more respect for Newsweek.  I guess it is time to cancel my subscription.

Thursday, November 12, 2009

Bad science might be genetic


Flickr Photo from
Chemical Heritage Foundation

If you give a kid a new toy they are going to want to play with it.  Never mind the heaps of older toys they they have, those are yesterday's toys and not worth even considering.  In a similar vein, scientists now have the tools to look at a person's genetic code more closely than they ever have in the past, and they have just got to play with them.

As a case in point, consider the article "Bad Driving May Have Genetic Basis, Study Finds" on Science Daily.  A group of researchers looking at a genetic variant that may play a role in memory decided to give a driving test to a group of 29 people.  There were seven people with this genetic variant in this group and the researchers found that  -
People with a particular gene variant performed more than 20 percent worse on a driving test than people without it -- and a follow-up test a few days later yielded similar results. About 30 percent of Americans have the variant.
So there you have it, the new toys have been used and have decreed that people with this particular genetic variant are worse drivers.  It isn't something they can help, after all, its genetic.

Only, I have to wonder, can this really be the case?  I went and found the study that this article was based on but since I refuse to pay 36 dollars for something like this I am only going what the abstract says and the article on Science Daily.

So I ask myself, what does this gene supposedly do?
This gene variant limits the availability of a protein called brain-derived neurotrophic factor during activity. BDNF keeps memory strong by supporting communication among brain cells and keeping them functioning optimally. When a person is engaged in a particular task, BDNF is secreted in the brain area connected with that activity to help the body respond.
Got that?  A protein plays a role in in keeping memories strong by strengthening the connections between brain cells.  This genetic variant is "limits the availability" of the protein which in turn might have an affect on memory which somehow translated into worse driving skills.  This result is already two thirds of the way to Kevin Bacon

I have to wonder if the researchers have ever heard of the concept of confounding factors.  In a sample of 29 people, isn't it more likely that some (or maybe even most) of group are simply bad drivers?

But wait, it gets even better. The researchers even got to use one of the coolest new toys around, an fMRI  -
Functional magnetic resonance imaging (fMRI) scanning during right index finger movement (n = 24) identified activation in a broad sensorimotor network. However, subjects with the polymorphism showed smaller activation volume within several brain regions as compared with subjects without the polymorphism.
So remember, if your brain doesn't light up as much when you twitch your finger, you might have a genetic variant that makes you a bad driver. It couldn't be that being a bad driver makes you a bad driver, there always has to be a genetic reason nowadays.

Kids and their toys.

Wednesday, November 11, 2009

Damaging DNA without touching it


Photo from berkeleylab (flickr)
This post is going to be somewhat off-topic from autism but this is something that I thought was interesting and could potentially one day have implications for some of the mysterious health problems like autism.
There is a study entitled "Nanoparticles can cause DNA damage across a cellular barrier" in the November 5th issue of Nature Nanotechnology that demonstrated that nanoparticles could, under laboratory conditions, cause damage to the DNA of cells that they couldn't touch.

Now, if you are like me and have only a rudimentary understanding of molecular biology then most of what the this study says will be indecipherable jargon.  Lucky for us, there is an article at The New Scientist that explains the results in easier to understand terms.

In simple terms, there were three items in a lab dish - a group of nanoparticles, a barrier made up of human cells that have been specialized for lab work, and a type of human cell (fibroblast) that is found in skin and connective tissue.  The nanoparticles were physically separated from the fibroblast cells by the barrier cells.

Yet, after a day in the lab dish, the fibroblast cells had damage to their DNA, presumably from the nanoparticles.  The New Scientist explains what might have happened -
The nanoparticles directly influenced the nearest layer of barrier cells and disrupted their mitochondria – chambers where energy is generated and stored.
That released signalling molecules – mainly the energy-transport molecule adenosine triphosphate (ATP) – which in turn triggered a cascade of biochemical messages inside the cell. That signalling storm eventually reached the other side of the barrier cell, opening channels that spread the message to the next layer of barrier cells.
This Chinese-whispers process continued until signalling molecules reached the fibroblasts, somehow damaging their DNA – the researchers don't yet know how this happened.
Or in a nutshell, the nanoparticles somehow disrupted the mitochondria of the barrier cell which in turn caused  damage to the DNA of the other cells.   The setup from this experiment is completely made-up and does not resemble anything that can occurs in the human body.  But at the same time, I did not realize that something like this was even possible.   It will be interesting to see if this result can be confirmed by other groups.

I don't think that this scenario in this experiment has anything directly to do with autism, nor do I think that nanoparticles have any sort of causal role in autism.  But, I have to wonder if there could be a mechanism similar to this that happening in some people with autism.  So far, studies that have looked for a genetic cause to autism have only found very small groups that share any sort of common genetic changes.  And the majority of these findings have failed to be replicated by other groups.  Perhaps the reason for this is that we have cause and effect wrong.  Perhaps these small genetic changes are not the cause of autism but rather the effect of another process that causes autism.

Just food for thought.

Wednesday, October 28, 2009

Mercury in the Blood


Mercury in bottle via usepagov (flickr)
Mercury and autism.  These two words go together as well as matches do in a dynamite factor.  For more than the a decade, a controversy has raged about whether exposure to mercury can cause autism.

Some think that the mercury that used to be contained in vaccines played a role in the rise of autism while others think that mercury is completely harmless and would drink it like Kool-Aid if they could.

Regardless of your opinion about mercury, you have to admit that it is a health risk and it is concerning that our exposure to it from the environment is on the rise.

But do children with autism have a higher exposure to mercury than typical children?  A recent study from the UC Davis M.I.N.D. institute seeks to answer that question.

Blood Mercury Concentrations in CHARGE Study Children with and without Autism

(This study is open access so I suggest reading it for yourself if you are interested)

In this well-designed study, which is part of the larger CHARGE study, researchers looked a group of 452 children to determine whether the subset of children with autism (249) had a higher blood concentration of mercury than did typical children (143), or children with other developmental delays (60).

On average, children with autism had a lower blood concentration (0.19 ug/L) than did typical children (0.28 ug/L).  But, after adjusting the results for environmental exposures to mercury, the children with autism had about the same level (0.26 ug/L) as did the control group (0.24 ug/L).  And, unlike some prior results, the levels of mercury that were found were in line with other national surveys of children.

I don't think anyone should be surprised by this result.  The mercury that is circulating in your blood is there because of your recent exposures to mercury - either from your diet, dental fillings, air pollution, or other sources.  Once it gets into your blood it goes one of two places - either out of your body through the normal channels or it will get stored inside your body.

I think the surprising result here is that children with autism eat that much less fish than typical children do.  I know that there can be food selectivity issues, but I would not have expected the result to have been so pronounced.

The other surprise here is just how much mercury children get from eating fish.  If I remember my childhood correctly, kids aren't that big on eating fish to begin with.  So if the presumably small amount that they eat can cause a large change in the amount of mercury you consume then it might be best to limit your fish intake.  And you thought I was joking when I said to not eat the fish because it might give you autism.

Unfortunately, this study is not going to put to rest the controversy that surrounds mercury and autism because it does not address what some feel is the central question.  Do children with autism have a problem in eliminating mercury from their bodies and does the build up of mercury cause problems that lead to autism?

If this is a problem in (some) children with autism (emphasis on IF), you would not see an increased level in the blood but would rather see a build-up in other tissues in the body.  But since there is no good way to measure this value (short of an autopsy), it is hard to address this question directly.  One possible way would be to look at the total intake amount of mercury and the total amount eliminated from the body.  What was left at that point would be the amount left in the body.  But, this too would be hard to do.

Regardless, I am sure that the debate will rage on.

Monday, October 26, 2009

Left Brain Right Brain's Jabberwocky


Jabberwocky (noun)
Nonsensical speech or writing

I think this one word sums up quite nicely where the once interesting site Left Brain Right Brain is heading.  I may not have agreed with much of what they have said but at least they were able make their points clearly and intelligently. But lately, clarity and intelligence seem to be heading out the window to be replaced with dogma, nonsense, and mean-spiritedness.

Consider the recent anonymous stalking of the mother whose child has autism.  I don't like to resort to name calling but I have no other words to describe this post where some pathetic person calling themselves "Guest Blogger" vomited years worth of hatred towards a mother simply because she was trying everything she could to help her child.  You may agree or disagree with what this mother did but you do not do what this "Guest Blogger".  You do not stalk a person online for years and then publish their correspondence to e-mail lists on a blog, out of context, and then hold them up for public ridicule.

This post represents mean-spiritedness at its worst and illustrates quite clearly the divide in the autism community.  I think it also shows how far Left Brain Right Brain has sunk.

Moving out of the slime pit, we come to a series of posts that are an attempt to analyze the recent NSCH data.  If you want a case study in how to do a poor job analyzing data, these posts are it.  In them we are treated to direct comparisons of prevalence to incidence, miss use of survey data, and a distortion of the meaning of time.  I took the time to debunk one of the posts but I didn't bother to address the others; it was too much like playing whac-a-mole (but without the fun).

But, I have to say that my favorite was the last one that looked at the "recovered" group in the NSCH data.  The group refers to the children who once had a label of autism but no longer do.  If you look at the number of this group compared to the total number of children who had autism and you end up with a controversial figure that has been dubbed the "recovery rate".  Some groups claim that is shows that children can be recovered from autism while others, like LBRB, say that the whole thing is just nonsense.

However, the only definitive nonsense is the analysis on LBRB.  Here the writers on LBRB apparently seem unable to distinguish between a child's birth year and the linear progression of time.  The result is a claim that this "recovery rate" is going down "with time".  Yet, if you look at the helpful graph on the page what you will see if that this "recovery rate" isn't going down with time, it is going down with the child's age.  Or to put it another way, the older the child, the higher the chance that they will be "recovered".  Since children tend to age from younger to older and since a hypothetical recovery would take time, I would have to conclude that the data actually says the opposite of what the writers claim.

Good thing LBRB didn't let a little thing like reality get in the way of a good story.

Anyway, moving forward in time (real time, not child birth years), we come to the latest of the absurdities, the posts about the IACC.

First up, we have the top seven mistakes that were made in the Dr. Landis issue.  Strangely absent from this list of mistakes is Dr. Landis writing down inappropriate comments in the first place.  Call me silly, but I think that was the first, largest, and most important mistake made in the whole mess.  If you are going to write trash about someone, you really should make sure that the trashee doesn't find out about it or read it online.

But, apparently writing the comments down was just fine with the rational people at LBRB.  According to them, the problem was that Dr. Landis was careless with her notes AND she should have stood up for her right to imply that her committee college was distorting the work of the IACC for their own personal ends.

That would have been a great way to rebuild the missing trust in the autism community.

The other beef that LBRB had?  That "Age of Autism decided that a surprise attack was more important that gathering all the facts and published the blog piece without comment from Dr. Landis."

I have to wonder if they gave the mother that they attacked the same courtesy?

Next, we have a call to "stop the intimidation tactics towards the IACC".  The arguments in this post get a little strange, but I think the main point is that criticizing the actions of members of the IACC should not be allowed.  I am not sure how this is intimidation, as far as I can see their are are threats or midnight visits to peoples houses.  No one has been kidnapped nor is their any blackmail.  But there has been (gasp) calls for a congressional investigation, a lawsuit, disagreements about research, and calls for committee members to resign.

In other words, politics as usual for this country.

The primary target of the post, here again, is Age of Autism.  Did you know that Age of Autism is apparently a cabal that represent all of those "anti-vaccine" groups.  Don't they know that they lost the autism omnibus and that less families are filing claims in vaccine court?

Wait, that didn't make any sense, but then again, neither did the post.

Finally, we have the declaration of war that has apparently been made against Tom Insel and the IACC by those "anti-vaccine" groups.  You know, the "anti-vaccine" cabal headed by Age of Autism.  They have their "friendly forces" which must mean it is an all out war against the IACC (no, the original post didn't make any sense either).

So, how was the war started, what was the shot heard around the world?  Simple, Age of Autism ran a post that called for Dr Insel to resign.

You know, there ought to be a law preventing just anyone from voicing their opinion about their government.  Maybe at the very least a questionnaire that asks something like "have you, or anyone you know, ever questioned the safety and effectiveness of vaccines".  If they answer yes, then by all means, prevent them from speaking or writing anything online, they could be dangerous.

I have to wonder when it became unacceptable to question the status quo.  I also have to wonder why anyone who questions the party lines of "autism is genetic" and "there is no epidemic of autism" suddenly gets labeled as "anti-vaccine".  It must be all of the open mindedness.

Anyway, it took just two days in LBRB time  for the "intimidation" to become an all-out "war" against the IACC.  I know that time moves faster on the internet, but I would have at least thought there might have been some posturing, chest thumping, or skirmishes between the two groups.

Then again, is it even possible for a small group of private citizens to intimidate a government committee, let alone declare war on it?  I think the only war here is Left Brain Right Brain's war on reality.

But seriously, Left Brain Right Brain used to be a good site, even if only to act as a counter point in the ever-present autism-vaccines debate.  You can never get any closer to the understanding something if all you have to compare notes against are people who agree with you.

Left Brain Right Brain, may it rest in peace.

Wednesday, October 21, 2009

What about Dr. Thomas Insel?


Photo Courtesy of U.S. Army
Dr. Thomas Insel is the Director of the National Institute of Mental Health as well as the chair of the Interagency Autism Coordinating Committee (IACC).  These two roles put him in a key position  to dictate the direction of autism research for the foreseeable future and to determine how federal funds are spent in this country.  Given what the success he has achieved, I have to assume that he is an intelligent person and is knowledgeable about mental health issues.

But I have to wonder at some his actions relating to autism.  Consider the following.

First is the matter of the public members of the IACC.  The IACC holds tremendous power to set the agenda for autism research for the foreseeable future.  It is composed of 12 representative from federal agencies and six members for the public at large.  Because of what is at stake, every autism organization, large and small,   wanted a seat on this committee.  Or to put it in a nutshell, these seats are very important as such should be given to those who are extremely knowledgeable about autism and would be able to make a strong contribution.

Yet, if you look at the public members, one of them stands out - Christine McKee.  Now, I do not have any first hand knowledge of this person or their qualifications but she does not appear to be associated with any major autism organization.  The only things I know about her comes from the IACC press release announcing the committee members -
Christine McKee, J.D., has developed and manages an in-home therapy for her autistic child, creating and/or assembling all of the therapy related materials.  Ms. McKee participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist.  She applies the therapeutic measures in her daily parenting and childcare routines.
This sounds like a description of every parent whose child has autism.  While I know first hand that this is not an easy job to do, how does this qualify her for a seat of the IACC?  Is she supposed to represent the view of the "typical" parent-advocate, if there even is such a thing?  How was Ms. McKee selected for this seat?

I believe the answer is that Ms McKee is Dr. Insel's neighbor.  I would like to think that Ms. McKee has more qualifications than just being a parent and choice of house but I can't imagine that she would be on the committee if she didn't live next door to Dr. Insel.

Why would Dr. Insel put his neighbor on the IACC?

Moving on, we come to the matter of the early adjournment of an IACC meeting that happened a few months ago.  At the end of this particular meeting, there was time allocated for public comments.  In order to make a comment you had to submit your questions, in advance, so they could be pre-approved.  One mother did just this - she submitted, in advance, questions that her son, who has autism, would be asking at the meeting.  The questions were approved and she was told that the comment time was at 3:30 on the day of the meeting.

The mother went through all of the preparations that were required to help her son get ready to ask the committee his questions.  Given the nature of autism and the nature of the event, I can imagine that the family had to do significant prep work.

On the day of the meeting, the mother decides to skip most of the meeting and to arrive at the scheduled time for comments.  I think we can all agree that sitting through a long meeting with a child with autism would not be anyone's idea of a good time (especially for the child).  So they arrive at the meeting at the proper time only to find that the meeting had been prematurely ended over an hour before.  The poor kid was left giving his comments to an empty room.

Needless to say, the mother was not pleased by this turn of events.  If it were me, I would be equally upset.

To be fair, Dr. Insel did call and  apologize to the mother afterwards.  But at the same time, I am not sure that makes much of a difference.  The people commenting were pre-approved, so the committee knew that they were coming.  Given what the committee is responsible for and the fact that it was a child speaking, I have to think that they would at least guess that the child had a form of autism.  You would think that the members of the committee would understand the challenges that a child with autism would have with this experience and do everything they could to make the experience a successful one for the child.  In this case all that would have meant was sticking to the published schedule and not leaving early.

Why did Dr. Insel let the meeting be adjourned early?  Did he simply not think it through or did he not care enough?

Which leads me to what is potentially the most disturbing item.  Let me just first say that I do not like reporting what is basically gossip and normally I don't give much credence to unsubstantiated stories.  However, in this case, the person reporting this story tends to be reputable and, even if the story below is only partially true, it would be a still be disturbing.

With that said, an allegation has been made that Did Dr. Insel refused to ride in an elevator with a child who had autism.  From the Adventures in Autism blog -
On April 17, 2007, Holly Bortfeld attended an autism hearing in the Senate Appropriations Subcommittee run by Senator Tom Harkin. At that hearing Dr. Thomas Insel, Director of the National Institute of Mental Health, now current head of the Interagency Autism Coordinating Committee, was there to testify.
Beforehand, Ms. Bortfeld, was waiting with her 11 year old son Max, who has autism, at an elevator on the way up to the hearing. When the doors opened they got on.  After they did, Thomas Insel and a female companion approached and entered the elevator just before the doors closed. Ms. Bortfeld reports that once they were on the elevator together...
"...Max stimmed. Insel looked at him, looked at me (yes, he had his little name tag on, so he knew that I knew he was) then he hit the open door button and ushered his coworker off. As the doors were closing, he said "I'm not riding up with them", looking at my son."
I initially had a hard time believing that anyone would do this, especially a trained medical professional.

But then I remembered all of the looks and comments that my family has received while out in public.  And the sorts of comments on stories like these that show the complete lack of understanding that the public at large has of autism.  And then I look at incidences like the above two items and the other controversies that Dr. Insel has been involved in as part of his tenure at the IACC.

And suddenly parts of the above story become more believable.  I still can't bring myself to believe that Dr. Insel would say "I'm not ridding up with them" but I could see him getting out of the elevator and even doing that small thing would say volumes about his character.

So I have to wonder, how much does Dr. Insel care about children with autism and is he the right person to be leading the IACC?

Tuesday, October 20, 2009

Dr. Landis Leaves a Trail of Genius at the IACC



Base photo via net_efekt

Note to self - if I pass notes at a public committee hearing that disparage a college, parents, or an advocacy group, remember to take they with me next time.

I imagine that Dr. Landis, director of the National Institute of Neurodevelopmental Disorders and Stroke (NINDS) and former member of the Interagency Autism Coordinating Committee (IACC) is telling herself something along those line today.

I usually try and stay away from stories that are run on Age of Autism but I think this one is kind of important. According to the story at Age of Autism,  Dr. Landis was observed at a recent IACC meeting exchanging notes with one of her colleges, Dr. State.  After the meeting was over, one of the parents attending the meeting saw that there were notes on the floor near were the good doctors were sitting.  People being who they are, the parents picked up the notes and the contents made their way to the Age of Autism site.

The contents of the notes are a fascinating glimpse into the mind of one the committee members.  There are five scribbled notes on the, four of which I will quote below.   If I am reading what was written correctly, Dr. Landis does not care for either the so-called "anti-vax" movement of Age of Autism nor the "anti-cure" movement of Neurodiversity.

This is what Dr. Landis had to say about vaccines and autism -
I wonder is Lyn Redwood is pushing autism as a multisystem disorder to feed into vaccine injury?
Would be a good justification for looking at vaccine injured kids who have gotten awards.
And about the Neurodiversity movement -
This is like the controversy over cochlear implants and the deafness co
There are advocacy groups claiming its more like homosexuality
As a direct result of these notes being published on Age of Autism, Dr. Landis resigned from the IACC committee on Saturday.  And, as David Kirby reports over at the Huffington Post, Dr. Landis issued an apology that her "personal reflections during the meeting have been taken out of context and have been interpreted by the community in ways that I would never intend".

She also threw a bone to the Age of Autism crowd and implied that her remark about looking at kids who have gotten awards really meant that she was in favor of looking for a link between vaccines and autism.

Yea, right.

Don't get me wrong, it would be a good thing if someone seriously tackled the remaining questions concerning vaccines and autism.  But I don't believe for a second that her second remark was talking about doing that.

As for what the ND movement had to say about this?  Well, if you need a good laugh go look at the attempted spin on this post at Left Brain Right Brain.  Poor Sullivan tries so hard to spin this into something that is isn't but all he ends up with his is own "big oops" that should have been deleted rather than posted.  But what else is new.

I think the true importance of what Dr. Landis wrote was the candor of her statements and the insight into what public health officials think of the various factions in the autism world.  There is the impression that the vaccine-autism crowd is looking for a quick payday and that the ND crowd is trying to trying to turn a serious condition into a trivial debate on whether autism is a mental health disorder and whether to treat it.

I don't necessarily agree with everything that Dr. Landis had to say but I do find it refreshing that officials in the government show signs of intelligence.  At least one of the above views is accurate (in my humble opinion).  Here's a hint - most people who have children with autism are looking for answers and a way to help their children - autism is not a get rich quick scheme (if it is, would someone please let me in on the secret?).

I believe the real reason that Dr. Landis is calling it quits is because of what she wrote about fellow committee member Lyn Redwood.  If you are going to publicly state that a college is in it for the money, you had best have something to back up your statement.  She may not have intended for her comment to become public but it did.  In the future perhaps she could prevent this sort of trouble by not passing notes?

Sunday, October 11, 2009

Wrong Planet, Right Ad?

I was reading something earlier today on the ever-so sophisticated wrongplanet.net when I ran into something that can only be described as hilarious.

Most of the denizens of site are of the opinion that autism is built into the person and is a part of their identity. They view it not as a disorder but as a characteristic of who they are - like someone else might feel about their race or religion. These folks tend to take a very dim view of people who even hint that autism could be caused by any environmental factor.

So, imagine my surprise when I happened to glance up to the top of the page and saw the following banner ad -


That's right, there was an ad about searching for measles at the top of wrongplanet.net, complete with fake little red dots on the kid's faces. Because, you know, if you are thinking about autism, the next thing you are going to want to search for information about measles. And that is so what wrongplanet is all about - measles and autism.

Wednesday, October 7, 2009

Autism in Twins

One of the more common things that you will hear about autism is that it is a genetic condition or that it has a "strong genetic component". I think that most people hear this and assume this means that there is some gene or mutation that runs in families that "causes" autism.

Unfortunately, autism is not so simple.

Researchers have spent a lot of time and effort searching for genetic causes for autism, and with the exception of Rett's Syndrome, have come up empty handed. Sure, there have been some small successes here and there but most of the promising leads don't pan out. A study will find a small group with a possible genetic commonality only to have the next study will come along and fail to reproduce the finding.

This leads to the question of why do we think that autism is genetic? If numerous large studies have failed to find anything that people with autism have in common at the genetic level, why exactly do we think that autism is genetic?

The answer is twin studies. There have been several studies done in the past that show that identical twins almost always both have autism while fraternal twins don't. This is taken to mean that autism must be genetic because, if identical twins both have autism and fraternal don't, it must be the shared genetics that makes the difference.

With that in mind I would like to point out the most recent study of autism in twins that was just published in Archives of Pediatrics & Adolescent Medicine -


In this study, researchers from the Kennedy Krieger Institute and Johns Hopkins looked at 227 twin pairs from The Interactive Autism Network (IAN) where at least one of the twins had a form of autism. IAN is an Internet based resource where parents can contribute information about their children with autism which can then be used by researchers. As a result of utilizing IAN, the researchers were able to look at more twins than any study has done before (previous studies had less than 50 sets of twins).

A total of 227 sets of twins took part in this study - 67 pairs of identical twins (58 male, 9 female) and 210 pairs of fraternal twins (97 male-male, 23 female-female, 90 female-male). For those of you who are not familiar with twins, the simple rule here is that fraternal twins are basically the same as siblings that happen to be born at the same time while identical twins share the same genes.

The results show that identical twins were about 88% likely to both have autism as well as (~ 90%) to have the same form and severity. However, what was not expected was that in all in male identical twins this rate was 86% while in female twins the rate was 100% and none had aspergers. Unfortunately, there were not enough female identicals for this finding to reach statistical significance but it was still interesting nonetheless.

Prior studies have shown that identical twins will both have autism somewhere between 60% and 95% percent of the time, so this finding was in line with prior results.

For fraternal twins the overall concordance was 31% which, while higher than was though in the past, is not too badly out of line. The interesting part here is that male-male fraternal twins had a 40% chance of both having autism, which is significantly higher than other types of fraternal twins.

Most other studies studies have placed the rate for fraternal twins to be the same as non-twin siblings, although a recent study out of Japan also showed a higher rate for fraternal twins.

For reference, in non-twin siblings, the rate is thought to be somewhere from 5% up to as high as 20%.

So what does this all mean for autism being genetic?

Well, because the majority of identical twins will both have the same type and severity of autism there clearly is something going on at the genetic level that can cause or predispose someone to autism. But, in at least 10% of cases, identical twins do not share their autism and in another 10% beyond that the severity level can differ.

This tells me that while genetics does play a strong role, it is not the entire story. There is something other than genetics that can determine whether someone will develop autism.

If you look at fraternal twins, they are more likely to both have autism than normal siblings. In the case of male-male fraternal twins that risk can be almost double. Remember, the only difference between fraternal twins and regular siblings is that they share the same prenatal environment and grow up in the same environment at the same time.

If autism was solely genetic there would not be a difference between normal siblings and fraternal twins, and yet there is. And in the case of male-male fraternal twins the risk is much higher than in normal siblings, and that shouldn't be the case either.

If you put these two parts together it becomes clear that there is likely something other than genetics that can cause autism. Or in other words, it is likely that there is a genetic predisposition that is triggered by some sort of environmental influence.

Obviously, I am simplifying things things a bit here and there could very well be other factors at work here. This is one study and, interesting though it is, it does not prove that there are environmental influences. But at the same time it does strongly point in that direction.

Maybe it is time to stop spending so much time looking for the autism's smoking gene and start spending more time looking at what environmental influences could be triggering it? Or here is crazy thought, how about if we devote some time to looking for the physical changes that autism causes in a person. Perhaps if we know what autism is and how it effects the body we might have a better shot at treating it?

Just food for thought.

Scientists and Dead Fish

Over at The Last Psychiatrist today there is a good post called "The Problem With Science Is Scientists" -
In a recent fMRI study, a salmon was shown a series of pictures of human faces showing various emotions: can a salmon distinguish them? and what brain regions are involved. 15 pictures, ten seconds each.

I won't bore you with the anatomy. Because of the small size of the brain, exact brain structures could not be distinguished, but something in the brain did light up. A statistically significant number of voxels, comprising an area of 81mm3 in the midline of the brain, were active (p<.0001).

So can fish interpret human emotions from a picture? I have no idea. I do know, however, that that fish can't do it: it was dead.
It is definitely worth the time, so go read the rest of it.

Sunday, October 4, 2009

Autism now 1 in 91

In a completely expected move, the CDC announced today that the autism is now thought to affect 1 in 91 children in the US.

This finding is largely based on a new study that was published today in Pediatrics. In the study the researchers looked at the recent results of the National Survey of Children's Health and, after cleaning up the data, arrived at the figure of 110 out of 100,000 children aged 3 to 17 have a form of autism.

The CDC has confirmed, through media sources, that the most recent (and still unpublished) ADDM data agrees with this estimate.

This number should not come as a surprise to anyone as this change has been widely expected for a while now. What concerns me is the reaction from the CDC over this issue. There has been plenty of press coverage today with reports from the Huffington Post, New York Times, CNN, NPR, and many others.

But, if you looked at the CDC's web site earlier today, there was not a word of the announcement. If you looked at the press releases on their site you would see that "Fewer U.S. Schools Selling Less Nutritious Food and Beverages" but you wouldn't see anything about autism. I realize this is a minor nit-pick, but you would think that they would at least have a press release about it on the day of the announcement.

Minor points aside, what really concerns me are comments like the ones attributed to Dr. Thomas Insel, the director of the National Institute of Mental Health and head of the Interagency Autism Coordinating Committee -
"The concern here is that buried in these numbers is a true increase," said Dr. Thomas Insel, director of the National Institute of Mental Health. "We're going to have to think very hard about what we're going to do for the 1 in 100."
He is concerned that, buried in a 60 percent increase, there might be a true increase? First it was 1 in 500, then 1 in 250, then 1 in 166, then 1 in 150, and now 1 in 91 and we are still debating about whether there is a true increase?

The prevalence of a profound disorder like autism increases by 500 percent over a twenty year period and the head of two major governmental agencies charged with addressing the problem needs to "think very hard" about what to do and wonders if the rate is really going up?

I guess the real question here is why the CDC and the US Government aren't doing everything in their power to find answers to some of the most basic questions about autism. These questions have have been asked for over a decade and it is long past for them to be answered.

Are we going to have to wait another few years and hear the same excuses when the rate of autism is approaching two percent?

Absurdities of the day

There must have been something in the air this past week because there have been strange things written in the past couple of days. Perhaps it is being caused by the anticipation of the big announcement coming tomorrow (something like pre-wedding jitters).

This brings us to the first absurdity of the day - tomorrow's big announcement. If all of chatter is correct, the CDC is set to announce that rate of autism in the US has reached 1 in 100 (or possibly higher). This is all due, of course, to the tireless work of the medical community. They have been expanding diagnostic criteria, raising awareness, and getting better at finding autism in children everywhere. Without all of their hard work for the past twenty years, we wouldn't have as much autism as we do today. So, if you happen to be talking to your child's pediatrician tomorrow, make sure you give them a pat on the back for a job well done.

The second absurdity of the day is Michelle Dawson. Michelle Dawson wrote a post yesterday claiming that it is only due to her hard work that people with autism in Canada are recognized as people. Well, actually, it was her suing her former employer for discrimination that she says did the trick. Before that people with autism were apparently not "human beings with human rights". Although, like most things in life, there is a catch - to qualify as human you have to meet Ms Dawson's definition of "most autistics" -
By "most autistics," I mean those of us, the majority of autistics in Canada, who have not received unlimited ABA-based interventions starting early in life.
So, if you are a parent of a child with autism and want to make sure that your child is considered a person you will want to immediately move to Canada and stop any ABA interventions you are doing.

(For a better treatment of this nonsense go see what Harold Doherty has to say on the subject, I can't bring myself to take such absurdities seriously).

And since strangeness, like deaths or weddings, always come in threes, here is the last one. Did you know that Hitler may have had autism?
Scientists and behaviorist have studied the life and mannerisms of Adolf Hitler, some believe he may have had Asperger's Syndrome, which is part of the Autism Spectrum. Michael Fitzgerald, an expert in the field, concludes that Hitler did indeed meet all the criteria set out by Hans Asperger.
If the diagnosing of historical figures isn't absurd enough for you, the comments on the post take it to a whole new level. The people who are normally so quick to agree with historical diagnosing seem to be distancing themselves from this one -
I have Asperger's diagnosis (in 2003) and I'm a mother of two children on the autistic spectrum. ... I'm also ethnically Jewish and just the idea that someone who killed millions of Jews AND people with disabilities, including those on the autistic spectrum is claimed to be LIKE ME is preposterous! Hitler was not autistic - he was psychotic and evil.
Comparing Hitler's behaviour to that of autistic people will only further victimise us who are 'different' while giving the real abusers yet another excuse why their abuse of us is 'justified'.
So remember, if you feel the need to diagnosis a famous historical figure with autism, make sure you pick someone who wasn't psychotic and/or evil.

Monday, September 28, 2009

Lies, damned lies, and statistics

As I wrote about last time, a new survey has been released in the UK that seems to show that the rate of autism in adults is the same as in children - about 1 percent. These results are being pushed as some sort of final confirmation that autism is as common in adults as in children.

Yet, if you take the time to look at what the survey says, you will see that this result of 1 percent is rather flimsy and based in large part on statical models. I am going to walk through the numbers and how this survey has put together to show what I am talking about.

Here is the document that I will working from -


A group of 13,171 households were selected from what was designed to be a representative population of people living in private households in England. The researchers contacted each of these households and 7,461 of them agreed to participate. From each household one person between the age of 16 and 74 was selected to be interviewed for the survey. This is referred to as phase I as of the survey.

These interviews took place between October 2006 and December 2007, which means that the latest birth year included in the survey should be 1990. As a side note for those people who think this survey disproves any relation between MMR and autism - keep in mind that the MMR was introduced in the UK in 1988. So the youngest people included in the survey most likely had the MMR.

Each person interviewed completed a series of short tests designed to determine the probability of Psychosis, ASD, Borderline personality disorder, or Antisocial personality disorder. Those that scored the highest in any of the four area were selected to be screened in phase II.

The autism section of this questionnaire has derived from the Autism Quotient screening test. But, the standard 50 question version of the test that was not used. The researchers thought that version was too long so they created their own version. They cut down the number of questions to 20 and changed the wording of some of the questions.

This custom test is one of the problems with this survey. Since this test has not been validated by other researchers (or even used anywhere else) it is difficult to know how well it finds individuals with autism. This becomes important later.

The exact method used to select for phase II is somewhat confusing. The simple way of looking at it is that the researchers converted each score in the four areas to a probability that this person would be selected for phase II. They then picked the highest single probability and used this as the chance that the person would be selected. Anyone who had a non-zero chance and agreed to participate in the second phase was included. This resulted in a set of 4,050 who were "eligible" for phase II.

The scales used to set the probabilities were very non-linear. For example, in the autism portion of the test the scores were grouped from 0-4 up to 12+. If your score was 0-4 you had no chance of being included while if your score was 9 you had 2.9 percent change, 10 was a 25 percent chance, 11 a 61 percent change, and 12+ was a 100 percent chance. There were similar scales for the other tests, and in general they worked the same way.

From this group of 4,050 the researchers selected those with the highest probabilities of being selected. This resulted in a group of 849 individuals that, out of the entire population, were MOST likely to have autism. Out of this group 630 agree to participate and were tested in a few ways, the most important being the ADOS. This test is considered to be the current "gold standard" for diagnosing autism.

In this group of 630 the ADOS ultimately identified 19 individuals with autism. So far, so good. The only real problem is that custom selection test.

If you look at the numbers at this point, the second phase of the survey covered the 8 percent of the population most likely to have autism and found about 3 percent of this group had autism. When put this back into terms of the entire population (19 in 7,461) you find that the rate would be close to 0.25 percent (about 25 in 10,000). This result is in line with past estimates of autism in adult populations.

This is where the survey gets strange. The researchers assert that, if they had examined the entire population of eligible for phase II, they would have found an additional 53 cases of autism. This would mean there would be 72 cases in all and the rate would jump to just under 1 percent. It is this assertion that is being widely quoted in the media.

Yet this figure is based on a complex statistical extrapolation that makes a lot of assumptions about the data. One of the main assumptions here is that anyone who had a score about 4 on the custom autism screening test had a non-zero chance of having autism. The problem is that we have no idea how good of a job this test does at finding people with autism. Is a score of 4, 7, 9, or highest actually associated with autism? This question has no answer because this test has not been validated. I am unsure that you can successfully extrapolate from a smaller group to a larger one when the properties of both groups are unknown.

I also find it hard to believe that, even though the segment most likely to have autism was examined, there are supposed to be more than double the the number of cases found in the remaining population.

If I gave a group of children a known screening test, such as the MCHAT, and used the results to select the 8 percent most likely to have autism, I would expect that this subset would contain most, if not all, of the children with autism. I would not think that there would be more than double the number of children in the other 92 percent of the population.

The other major problem with this survey is that we are not given any data about the age of the individuals with autism. All that we are told is that there were not enough individuals found to group into "narrow bands of 10 years", but, when combined into three broad bands of 20-30 years, there was a "slight downward" trend. The end result is that we have no real information about the ages of these individuals so it is entirely possible that they are mostly found at younger ages. But what we cannot say from what we know is that autism is evenly distributed across adults of all ages - we lack the data. But again, this is being claimed in the media.

The bottom line here is that you have to be careful when looking at the results of surveys or studies. It is way too easy to get the results that you want using statistics.

(P.S. If you made it all the way down to the bottom of this post you deserve an award)