Friday, November 19, 2010

Diagnosing Historical Figures : Biblical Autism

Flickr photo by Mary Harrsch 
Did you know that the biblical character of Samson from the Old Testament might have had autism?  Neither did I until it in a study included in an e-mail notification from PubMed today.

No, I am not joking.

I really didn't want to write a third snarky post in the row, but this is too much.  I know researchers sometimes publish things like this as sort of a tongue-in-cheek paper, but really.

But when I opened up my e-mail this morning, there it was" Newer insights to the neurological diseases among biblical characters of old testament", sandwiched between "The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): A Scale to Assist the Diagnosis of Autism Spectrum Disorder in Adults: An International Validation Study" and "Family-based association testing of glutamate transporter genes in autism".

The paper is available online, so go read it if you want.  But the, uhm, substance of the the reasons for the historical diagnosis can be summed up as follows -

1. Samsom had "violent movements of the body" at various times which might have been seizures.  Seizures are common in some people with autism.

2. Samson is said to have eaten a swarm of bees and honey that he found in the carcass of a lion.  Abnormal eating habits have been seen in children with autism.

3. Samson showed a "failure to understand deception" because he believed his strength lay in his hair and that he would lose his strength if his hair was ever cut.  I think it would have been more plausible if they went with resistance to change instead of the deception angle, but that's just me.

4. Samson performed many physical feats throughout his life, feats he may have only been able to perform because he was insensitive to pain.  Some people with autism have been found to be insensitive to pain.

So there you have it, Samson joins the ranks of those with a post-humorous diagnosis.



Mathew SK, Pandian JD. Newer insights to the neurological diseases among biblical characters of old testament. Ann Indian Acad Neurol [serial online] 2010 [cited 2010 Nov 19];13:164-6. Available from:

Wednesday, November 17, 2010

Jabberwocky of the Day : Imaginary Data

I feel as if I have said this before, but science is all about data.  First you come up with an idea, then you go collect data, and finally you analyze the data to see if it supports your idea.

This process is formally known as the scientific method and, for the most part, it works well.  Sure, you will occasionally run across something where the researcher seems to have started out with the conclusion and, working backwards, selected only the data that fit the conclusion, but that doesn't happen all that often.

But, every once in a while, you will run across a paper where the researchers seemed to feel that the whole collecting data thing is overrated and went straight to the conclusion without bothering with any data.  I ran across an example of this last type recently and couldn't help but point it out.

The paper in question is "Prevalence of Pervasive Developmental Disorders Among Children at the English Montreal School Board" (open access, go read it) and it dealt primarily with measuring autism prevalence in a group of schools in Canada.  Overall, the paper wasn't bad and it showed what almost every recent study of autism prevalence has shown - the prevalence of autism increasing every year because of reasons unknown.  This part of the paper had real data behind in in the form of school records.

But then, there is this second part to the paper and that is where things get a little, well, strange.  Lets go through it from the top.

In the abstract of the study, you will find this objective listed -
Our objectives were to determine prevalence rates of PDDs among school-aged children, and to evaluate the impact of discontinuation of thimerosal use in 1996 in routine childhood vaccines on PDD rates.
Pay attention to that second part (yes, sorry, vaccines again), and what it implies.  The goal is to measure what impact - if any - the removal of thimerosal had on autism prevalence. To do determine that, you need some measure of exposure to thimerosal.

With that in mind, look at the "Conclusion" section of the abstract -
Our study provides additional evidence that the PDD rate is close to 1%. We estimate that at least 11 500 Canadian children aged 2 to 5 years suffer from a PDD. The reasons for the upward trend in prevalence could not be determined with our methods. Discontinuation of thimerosal use in vaccines did not modify the risk of PDD.
And, in the main body of the study, look at the "Interpretation" section -
As in other studies where the effect of the discontinuation of thimerosal in childhood vaccines was examined, no change in the underlying population trends for PDD rates could be observed in relation to thimerosal discontinuation.
I think it is obvious that the authors feel that their data shows that removing thimerosal didn't impact the rate of autism.  So, clearly, the paper should have measure of thimerosal exposure, right?

Wrong.  Look in the section of the paper entitled "Exposure to TCVs" -
Individual immunization data were not available for study subjects.
Wait, data about the actual exposure to vaccines and thus the exposure to thimerosal wasn't used?  Then how did the authors support their conclusion?
In Quebec, thimerosal was removed from vaccines used as part of the recommended childhood vaccine schedule in 1996. In previous years, exposure to thimerosal varied from 125 to 200 micrograms for birth cohorts included in our study.
Oh. So every child born before 1996 was assumed to have exposure to thimerosal but every child after that was assumed to have no exposure?
The prevalence in each individual birth cohort born in or after 1996 was consistently higher than that in cohorts born prior to 1996 (Table 1). ... Further, the inclusion of a dummy predictor variable indicating exposure or not to thimerosal (before or after 1996) to the model predicting prevalence with birth cohort did not improve the model and was not significant.
OK, no thimerosal data, just a "dummy predictor variable".  Hmm.  If thimerosal was completely removed from all vaccines in Quebec, then what should we make of this "Statement on Thimerosal" from the "National Advisory Committee on Immunization" in 2003 -
In Canada, the vaccines currently used in routine infant immunization do not contain thimerosal (see Table 1). Some hepatitis B vaccines licensed in Canada do, but one formulation with no thimerosal and another with only trace amounts are now available in Canada, and NACI recommends their use in infants preferentially. The two hepatitis B vaccines in which thimerosal is added as a preservative are gradually being phased out. Influenza vaccine also contains thimerosal but is only recommended for use in Canada for those infants > 6 months of age. The other vaccines licensed in Canada that contain thimerosal are primarily used for people travelling to developing countries and are not routinely administered to infants.
So, thimerosal was completely gone in 1996 - except that in 2003 it was still in some hepatitis B vaccines, the flu vaccines, and "other vaccines"?  I guess it is possible that Quebec did remove it completely from all vaccines in 1996 and it is only the rest of Canada that didn't.

But, even if that were the case, you would still have people moving from other parts of Canada or from other countries that would still have had exposure to thimerosal, so the "dummy" variable with the arbitrary cut-off date has no real relation to actual exposure.  And if there is no measure of exposure, how can the researchers conclude that removing that exposure had no effect?

Note to the researchers - next time actually have data to support your conclusion.

Tuesday, November 16, 2010

When Age Of Autism Attacks

Over at Age of Autism, J.B. Handley has launched a broadside against the Internet persona known as "Sullivan".  In his attack, Mr Handley alleges that "Sullivan" is not the father of a child with autism as he claims but rather the pseudonym of one Dr. Bonnie Offit - the wife of the infamous Dr. Paul Offit.

Mr. Handley gives all sort of reasons for his allegations, reasons ranging from a comment that he found that refers to "Sullivan" as "her" to the fact that s/he never talks about his/her child to the fact that s/he defends Dr. Paul Offit at every opportunity to the fact that s/he is a person who is "smart, organized in their thinking, and extremely facile with complex medical terminology."

As an aside, that last reason makes me wonder who exactly he is talking about.  The Sullivan that I have run across and who posts at Left Brain Right Brain may be intelligent but s/he tends to make rather glaring mistakes whenever s/he tries to deal with any complex subject.

Regardless, I have to say that while I won't agree with Sullivan on much, s/he does not deserve this type of treatment.  I don't care if "Sullivan" is a humble father, Dr. Bonnie Offit, or a gaggle of evil pharmaceutical shills, it is not acceptable to attack the person.

So, Age of Autism, I think you owe "Sullivan" - whoever he/she/they might be - an apology.  Let the poor guy have his anonymity so he can continue to spread ignorance in peace.

Friday, November 12, 2010

Modeling Rett Syndrome

Picture from Wikimedia Commons
According to a new paper, published in the Nov 12 issue of Cell, it may be possible to grow a model of what neurons look like in people with Rett Syndrome.  I have to say, if this is a real result - and can be reproduced by other groups - then this is potentially a huge leap forward for people with Rett Syndrome.

For those of you who don't know, Rett Syndrome is a form of autism that is somewhat different from other types of autism.  Rett Syndrome is very rare and is seen primarily in girls instead of boys.  It tends to involve more motor issues and be more severe than "typical" autism.  Also, children who are affected might not respond as well to standard autism treatments such as ABA.

However, unlike other types of autism, a possible mechanism for the problems of Rett Syndrome has been identified - a mutation in the methl-CpG-binding protein 2 (MeCP2) gene.  And, more importantly, recent research has shown that it might be possible to reverse the effects of this mutation and effectively "cure" people of Rett's.

With that in mind, forget about all of the media reports that are talking about replicating autism in a dish and instead focus on what the researchers actually accomplished.

At the risk of over simplifying, the researchers took some cells from girls with and without Rett Syndrome, turned them into a type of stem cell, and then had them grow into neurons.  The neurons from the girls with Rett's had significant differences from the neurons grown from the "typical" girls.  The differences seen in these cells were similar to what has been seen in mouse models of Rett's and in human autopsies of people who had Rett's.

So basically, researchers grew neurons that closely mimic what real neurons would be like in people with Rett's.  Given that it might be possible to reverse the damage cause by Rett's, this ability to grow neurons and test how they react to different treatments is invaluable.  The researchers already presented some data in the paper showing that certain treatments that were thought to be helpful with Rett's actually do help.

I can't really do the subject justice, so if you are interested in the topic I suggest that you read the paper.  The paper, along with a good introduction, is freely available from the journal's web site.

The downside here, if there really is one, is that results don't apply to other forms of autism.   In Rett's, we have a known mutation, some idea of what the model should look like, and a way to judge the results.  In other forms of autism, we have no real clue what causes the problems and no idea of whether a specific type of cell would be a good model of anything.  Having some sort of biological mechanism to target can make all the difference in the world.


Marchetto, Maria C N et al. 2010. “A Model for Neural Development and Treatment of Rett Syndrome Using Human Induced Pluripotent Stem Cells.” Cell 143:527-539.

Walsh, Ryan M, and Konrad Hochedlinger. 2010. “Previews Modeling Rett Syndrome with Stem Cells.” Cell 143:499-500.

Thursday, November 11, 2010

The Hazards of Self-Diagnosis

Flickr picture by The Doctr
A few weeks ago, I talked about why it wasn't the best idea to give yourself the Autism Quotient and act based on the results of the test.  The Autism Quotient is not meant to be a diagnostic test and, even if you get a high score on the test, you are still fairly unlikely to have autism.

But, for the sake of discussion, lets say that you do have a history of having some autism-like symptoms and decide to take the test.

If you get a high score on the test you might believe that, based the test result and your life experiences, it is likely that you have a form of autism.  After all, you are an intelligent, mature person who has carefully done research and made honest self-appraisals.  And the AQ test bears out your idea, so what could be wrong?

Well, to start off with, you might have schizophrenia, not autism.  According to a study1 published earlier this week (open access, go read it) -
In clinical practice, differential diagnosis of high-functioning autistic spectrum disorder (ASD) and schizophrenia (SCH) is difficult but important. It is especially difficult when adult patients with ASD have psychotic symptoms as a result of maladjustment to their circumstances. Diagnosis of ASD requires a knowledge of early developmental history, but sometimes that is difficult to clearly ascertain when the patient is an adult. If such patients were not diagnosed as having ASD during their childhood, we cannot distinguish their symptoms from the positive symptoms of SCH. Similarly, when ASD patients are in social withdrawal or in an autistic state, it is difficult to distinguish their state from the negative symptoms of SCH. Thus, a reliable measurement for differentiating the two disorders is needed.
This study looked specifically at the Autism Quotient (AQ) test and how well it could distinguish between high-functioning autism and schizophrenia in adults.  The researchers gave the AQ to 51 adults of normal intelligence who had either autism or pdd-nos and 46 adults who had schizophrenia.

The main result was not too surprising.  The autism group, as a whole, scored higher on the AQ than the schizophrenia group. But - and this is the important bit - the AQ misclassified 8 (17%) out of the 46 patients who had schizophrenia as having autism.  As the researchers say in their discussion section, "high AQ patients with SCH cannot be distinguished from ASD by using only the scores of the total AQ and its subscales".

Let me put this another way.

The AQ can't reliably tell the difference between schizophrenia and high functioning autism.  Trained clinicians - people who do this everyday as part of their job - have a hard time as well.  So what do you think the chances are that an untrained person, researching the condition on their own, is going to be able to tell the difference?

Now, before you think this doesn't matter, consider that schizophrenia is known to be more common in adults that autism is.  The current figure for schizophrenia is about 1 in 90, or about 1.1% of adults over the age of 18.  The rate for autism in adults is not well understood but is, by most accounts, much lower than 1%.  I think it would be safe to say that, even if we were to be highly optimistic about how many adults have autism, there are going to be 3 adults with schizophrenia for every 1 with autism.

So, assume that you had a group of 1,000 adults where you had 4 adults (1 in 250) that had autism and 11 that had schizophrenia, and that you gave them the AQ.  Based on what we know about the AQ, we would expect about 25 of the group to score in the autism range.  Out of that group, most (20) would be misidentified, 3 would have autism, and 2 would have schizophrenia.

Or in simple terms, if the AQ gives you a high score and it is picking up on something that is really there, you have almost a 40% chance of having schizophrenia instead of autism.  That little fact might be important as schizophrenia is more easily treated than autism is.

All of this is just one small example of how a self-diagnosis could go wrong.  There are many other ways that the process can go wrong.  The bottom line is, if you think you have a problem, don't self-diagnosis.  Go talk to a professional who knows what they are doing.

1. Naito, Kenichi, Yusuke Matsui, Kiyoshi Maeda, and Kiwamu Tanaka. 2010. “Evaluation of the Validity of the Autism Spectrum Quotient (AQ) in Differentiating High-Functioning Autistic Spectrum Disorder from Schizophrenia.” The Kobe journal of medical sciences 56:E116-24.

Thursday, November 4, 2010

Jabberwocky of the Day : ASAN Protesting Autism Speaks Walk (Again)

The "Autism Self Advocacy Network" is at again, this time planning to protest the Autism Speaks Walk on Saturday in Washington D.C.  While Autism Speaks is not exactly my favorite autism organization, I really have a hard time understanding exactly why these young aspies feel the need to protest at a fund raising walk and what they hope to accomplish.

If you have ever been to one of these walks, you would know that they are mostly made up of  parents whose children have autism as well as their families and friends.  I think it would be safe to say that the majority of the people at these walks are people whose lives' have been impacted because of a child's autism.  These are people who take autism seriously and are doing what they think is a good thing to help everyone who is affected by autism.  They are not going to take kindly to being heckled for supporting what they feel is a worthy cause.

So, ASAN's planned protest begs the question, what exactly do they hope to accomplish?

The people at the walks are not ignorant of autism and certainly don't need their awareness raised - they are quite aware already.   I am starting to think that ASAN organizes these protests because they don't have any other better targets and they feel the need to protest something.

But, to be fair to ASAN, I went looking for the specific reasons that they are protesting these walks, but all I can find are reasons like the following -
The group of protesters will be protesting the lack of funding that Autism Speaks spends on funding services for children and adults with autism, as well as the fact that they are researching a prenatal test for autism to encourage soon to be parents to abort fetuses of children who may have Autism. 
So lets talk about these reasons.

The first reason is slightly valid - Autism Speaks does not spend very much funding services for children or adults with autism.  But, and this is the important part, they never said that they would.  According to the organization's site, funding services is not their primary mission -
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
So I am not really sure what ASAN's beef is.  You can't just go up to an autism non-profit and say "Hey, I have autism so I should decide how you spend your contributions."  Autism Speaks is very clear about how they are going spend the money that they raise.  People who give money to Autism Speaks do so with the understanding that it will be used to pursue the goals of the organization.

If ASAN doesn't like the goals, then the proper course of action is for them to discourage their members (and anyone else who will listen) from donating to Autism Speaks.  They should set up their own non-profit and and do their own fund raising.  If people agree with what ASAN plans to do with the funds, then they will donate - if they don't then they won't.  But it is completely wrong for ASAN to try to misappropriate funds given to Autism Speaks for its own agenda.

As of the second reason, that Autism Speaks is trying to develop a prenatal test for autism with the goal of aborting all children with autism, well, I think the following picture sums up my thoughts on the matter.

Any person with more than half two working brain cells should understand that the goal of genetic research is to find answers as to what causes autism so that better treatments can be found.  If you don't understand what something is or what it does then it is very hard to come up with an effective treatment.

The goal of genetic research is not to commit genocide against some theoretical autistic race.  Autism is not about civil rights or about protecting some different race of autistic people.  Autism is a mental disorder and people who suffer from it need help.

If anyone knows of any other reasons why ASAN is protesting Autism Speaks, feel free to leave a comment and tell me what I missed.  But, from what I can see, ASAN is doing nothing more than behaving like an immature adolescent.  Their goals are certainly not in the best interests of people who are disabled by their autism and I have to wonder what exactly they think they are going to accomplish.

And if they think that heckling people at an Autism Speaks walk is going to get people to take them seriously, they are very badly mistaken.  Because from my perspective, they are doing nothing more than being a nuisance and getting in the way of the people who are trying to solve a very serious problem.

Special Ed. Autism Prevalence in Wisconsin

One of the top questions about autism today is whether autism is becoming more common or whether we are simply getting better at recognizing it.  But while there have been many attempts in recent memory to answer this question, no one has been able to definitely say one way or the other what is going on.

Recently, a paper entitled "Trends in the Prevalence of Autism on the Basis of Special Education Data"1 was published in Pediatrics that took a slightly different approach to the subject.  In this paper, researchers looked at special education data from Wisconsin and concluded that it looked like the prevalence of autism in school districts seemed to be leveling off.

To reach these conclusions, the researchers took publicly available educational statistics2 for public elementary schools in Wisconsin and used it to calculate a special education autism prevalence by year (2002 to 2008) for each of the 415 school districts.  They then grouped the schools into eight groups based on the  autism prevalence in 2002 - these groups are called octiles.  The first octile contained all of the districts with the highest prevalence while the eighth contained the districts with the lowest prevalence.

When they analyzed the resulting data, the researchers found that the autism prevalence in the highest octile did not increase nearly as much as the other seven.  Their results looked approximately like the chart I produced below.

As you can see on the chart, the line representing the top octile is increasing slowly while the lines for the seven other octiles are increasing faster and seem to be converging on the top line.  The researchers took this as evidence that the grown of autism prevalence in Wisconsin seems to to be "leveling off" as it approaches the level of the highest octile.

The crux of the paper's argument is that to properly see this leveling off you have to consider changes in smaller areas that are "not necessarily influenced by special eduction practices in surrounding areas".  The idea is to try and separate out the effect of changing special education policies from an actual increase in autism prevalence.

While this argument sounds good in theory, I don't think it is realistic in practice.  The reasons get a little involved and I am going to talk about them in some depth below.  But, for those of you who don't want all of the details, the short version is that it isn't that the prevalence is leveling off but rather it is becoming more uniform.  Instead of having a large variation in autism prevalence by area, we are instead seeing a more consistent range across all of the areas.  But still, the overall trend shown by the data is up and autism is still becoming more common in Wisconsin, at least by special education measures.

Before I start, let me say that all of the data in those post came from the same publicly available source that the paper used.  I tried to match what the paper did as closely as possible but there are some differences between my numbers and the ones used in the paper.

The major difference was that I included data from 2009 while the paper only included up to 2008.  I don't know why the paper stopped at 2008 - I suppose it is possible that the data was not available when they pulled their data.  I don't think that is too likely since the paper said the data was downloaded only six weeks ago (Sept 13, 2010), but who knows.  Other than that, there are a few places were I arrived at a slightly different number than the paper had but I don't think any of these differences are significant.

Ok, first of all, you have to keep in mind what these numbers represent and what they don't represent.  These numbers represent the number of children in Wisconsin public schools that have a primary special education label of autism.  These numbers do not represent all of the children in Wisconsin who have a diagnosis of autism (a medical diagnosis is a different than a special education label).  There are going to be other children in the same age group who do not go to public school, who have a diagnosis of autism but not a primary special eduction label of autism, or who don't have a diagnosis of autism but have a special education label of one so that they are eligible for services.  Or any permutation of the above.

So you can't look at these numbers by themselves and say that autism is becoming more common.  You can, however, compare the trends seen in these numbers to the trends seem in other data sets - such as national surveys or HMO medical records - and see that the general trend shown by all of the data is up.  But that is a topic for another time.

The first problem with the analysis done in the paper is that there are a lot of very small school districts in Wisconsin and the prevalence per 1,000 in this districts can move violently with the addition of even a single child.  Take or example the district "Dover #1" which had a total of 92 elementary students in 2002.  This district had 1 child with a label of autism,  giving it a prevalence of 10.9 per 1,000 children, and placing it in the highest octile in 2002.

If you added a second child to the district, that would basically double the prevalence and take it to 21.5 per 1,000.  If you took one child away, the district would have dropped from the highest octile all the way down to the lowest octile.  Quite a big swing.

The point is that even a change of a single child is enough to skew the results when the total numbers are small.  While there is no hard and fast rule about how many children you would need to get a reliable estimate, you can safely say that you need more than 100.

Since the "accepted" rate of autism in 2002 was something like 6.6 per 1,000, I think you would need to have at least 500 children in your group to overcome this bias.  With 500 children, changing the number of children with autism by 1 will move the resulting figure by 2 per 1,000 while with 100 children a change of 1 child will result in a change of 10 per 1,000.

Unfortunately, less than half of the school districts in this paper had more than 500 students.  When you look at the octiles in the paper, almost 60% of the highest octile and 80% of the bottom octile had less than 500 students.  That means that those two octiles are going to be heavily influenced by districts that can be moved by the addition or subtraction of a single child with the label of autism.

Which brings me to the second problem - availability of services.  The paper makes the assumption that the smaller geographic areas - especially ones with higher prevalence - are not going to be as heavily influenced by overall policy changes as larger ones would be.  It argues that the highest octile represents the vanguard of the shift towards a higher acceptance of autism.  These districts would be the early adopters if you will, and the rest of the districts are simply playing catch up.

The problem is, if this is true, that these districts would attract students from the surrounding areas because of the better services offered.  I can tell you from experience that parents who children have autism compare notes about how good the services offered by a certain school district are.  If there is a district in an area that has better services available than the others, parents can either ask their local district to send their children to the other district or move into the other district to access the services.  This exporting of children with autism would be especially common in districts with poor or no services.

On the flip side, districts with poor services are going to attract fewer children.  Parents will seek out and move into districts with better services or, failing that, will pull their children out of the public school system altogether and send them to private school or home school them.

But over time, as the lagging districts start catching up with the early adopters, parents will have less incentive to move to other districts and will be more likely to send their children to their current district.  This would result in the districts with better services losing students (or not growing as fast) and the lagging districts gaining students more rapidly.

The net effect would be that the prevalence would become more even across the districts over time, independent of any real increase or decrease in prevalence.  I think that is what the Wisconsin special education figures  actually show.

To give a theoretical example, assume that you have two adjacent school districts (A and B) that both have 1,000 students, 5 of whom have a special education label of autism.  The one district (A) has better services than the other (B), so 3 of the students with autism from B switch to A.  So District A starts off with 8 students with autism (8 per 1,000) while district B only has 2 (2 per 1,000).

Now assume over the next few years that two things happen. First, the rate of autism doubles so that both districts would have 10 children with autism.  Second, the services between the two districts even out and, as a result, the children who switched to A go back to B.  The net effect would be that district A goes from 8 students to 10 while B goes from 2 to 10.  If you then compared their relative growths, you could conclude that B is simply catching up to the higher rate in A and that A isn't growing as fast as B.  This is what the paper concluded  - but that isn't the complete picture.

If that example is a bit too theoretical for you, how about a real one from the Wisconsin data.  Consider two adjacent districts in northwest Wisconsin - Amery and Clayton - and their seven surrounding school districts.  In 2002, these districts were both included the top octile with Amery having a total of 7 children with autism out of 835 students and Clayton having 6 out of 205.  These two districts had a total of 13 children and 1,050 students for a combined rate of 12.5 per 1,000.  In 2002, the other seven surrounding districts had a total of 16 children with autism out of a total of 3,545 students, or 4.5 per 1,000.

In 2009 Amery and Clayton decreased to a combined 10 students with autism out of 983 students (10.2 per 1,000) while the surrounding seven districts increased increased to 30 out of 4,247 or 7.1 per 1,000.  Now, does that mean that that the surrounding districts are simply coming up to the level of Amery and Clayton or are the students with autism simply being more evenly distributed?

If you look at the chart below, I think the answer is clear.

The prevalence of autism in these nine districts are getting closer together but, as you can see from the red trend line, the overall trend of the data is going up.

Now consider the fact that Amery and Clayton were in the top octile group while none of the other surrounding districts were and I think you can see what is going on with the data.  If you look at the change in prevalence data for all of the districts state wide, you can see a similar pattern.

It is a little hard to see, but the overall trend is that the prevalences are becoming less varied and grouped closer together - meaning that the prevalence is becoming more uniform.  And, the overall trend across all of the data, as shown by the trend line, is heading up.

To address the problems of sample size and availability of services, you have to consider a wider area.  I know the idea of the paper was to look for localized trends in the data but, as I have shown, areas this small are going to be effected by the services offered by their neighboring regions and have few enough children that even a small change in the number of children with autism can greatly change the result.

To that end, I grouped the data based on Wisconsin's 12 CESA areas and charted the result.  While these regions are not equal in size - the smallest had 8,000 elementary students in 2009 while the largest had 138,746 - they do have the advantages of not being so easily skewed because of small numbers and getting rid of some of the noise created by services.  As you can see below, the result is quite different when you look at it like this.

All of the CESA showed a similar gain over the seven year period and the overall trend is unmistakable - the prevalence is going up.  It would be tempting to look at a chart like this and assume that autism did become much more common over this time period, but you have to remember what this data is and what it isn't.  You can't look at special education numbers alone and conclude that autism is increasing.

However, I do think it is clear that the special education prevalence of autism in Wisconsin is not showing any signs of leveling off.


1. Maenner, M. J., and M. S. Durkin. 2010. “Trends in the Prevalence of Autism on the Basis of Special Education Data.” Pediatrics 126:e1018-e1025.

2. Wisconsin WINSS data, accessed Oct 29, 2010

Monday, November 1, 2010

Silence Is Not the Answer

Today is November 1st 2010 and today we are encouraged to stop talking to foster a greater understanding of the social challenges faced by people with autism.  I have to say that I don't like that idea.

People who struggle with autism are forced by their autism to be silent each and every day during the year and yet another day of silence is not what they need.  What they need is for the world to understand exactly what autism is - and isn't - as well as what can be done to help them overcome their disability.

Autism is a profound developmental disability that affects more and more people - especially children - each year.  Autism disrupts a person's verbal and non-verbal communication skills, makes it harder for them to interact with other people socially, and limits their ability to tolerate changes in their environment.

Autism is not about being just being socially awkward, shy, or quiet nor is it about being technologically proficient.  A person with autism does not always have special gifts that compensates for their lost abilities.  Autism is not just about being "different".

Autism is a crippling disorder that robs people of abilities that they would normally posses.  It robs them of the ability to live a "normal" life.  In the many cases, it robs them of the ability to be self sufficient and take care of their own basic needs.

As of today, science knows very little about what autism is, what causes it, or even if it is becoming more common (p.s. it is).  As of today, autism has no known cure and precious few treatment options.

In short, autism sucks.

But, in spite of all of that, a person with autism is not a lost cause.  A diagnosis of autism does not mean a person is beyond help and should be discarded or institutionalized.  A person with autism is still a person and still deserves the same level of acceptance and respect as everyone else.

Autism is something that a person can have but it does not have to be something that has the person.  A person with autism can, with help, overcome the limitations imposed by autism.

The problem is that there are no one size fits all approaches to dealing with a disorder like autism.  As the saying goes, if you know one person with autism then you know just one person with autism.  Each person with autism has their own unique set of problems and each and every problem needs its own unique solution.

But still, it is possible to slowly chip away at the disabling aspects of autism and help a person with autism to reach their full potential.  I am not going lie and say that this is a quick or easy process.  There is no quick fix when it comes to autism but there could be a slow, methodical one that takes years upon years.  The challenge is to find the solution that will work for a specific person.

So today, instead of thinking about the silence that autism can bring, I would ask you to instead think about how you can best help a person with autism overcome their disability.  Today, the goal should be to be help them throw away the "with autism" and become the person that they can be.