Tuesday, December 21, 2010

Happy Holidays

With the silly season in full swing, I have not had a chance to sit down and write anything for a while.  But Jabberwocky will be back in the new year.  So...

May you and your family have a happy holiday season.  

(and may autism not wreak havoc on your plans) 

Sunday, December 12, 2010

Bruesewitz v. Wyeth : Unavoidable Outcome

Flickr Photo by dbking
As I have talked above a few times before, there is a vaccine injury case - Bruesewitz v. Wyeth - currently being decided by the U.S. Supreme Court.  If you are interested in reading the filings and arguments before the court or would like to read a summary written by someone who actually understands the legal issues, I would refer you to the excellent page on SCOTUSblog.

The arguments before the court were heard about a month and a half ago and, while I was planning to write about it at the time, I never had the chance to do so.  But now, since a decision from the court might be handed down in the next few weeks, I thought it might might be a good time to talk about the case again.

First let me say that I am not a lawyer nor do I play one on the internet.  I have read the filings and the transcripts from the the case several times and have attempted to understand the legal issues involved.  I think I understand the basics but my knowledge in this area is extremely limited and I could very easily be misunderstanding what is involved.

However, having said all of that, it is my opinion that Bruesewitz is going to lose their appeal.  I think that the Supreme Court is going to basically say that vaccine manufacturers cannot be sued in civil court for any injuries that could be reasonably be expected to occur after being given a vaccine.  The Court is going to find that the only venue for these sorts of claims is the so-called vaccine court.

The reasons I say this have absolutely nothing whatsoever to do with any debate surrounding vaccines or vaccines and autism but rather are completely based on what the relevant laws are.  In this case, the controlling law is the one that created the National Vaccine Injury Compensation Program in the first place.  This law created the Office of Special Masters inside the US Court of Federal Claims - the so-called vaccine court, established how that program should work, and set the terms under which vaccine injury claims could be heard by civil courts.

So the central issue in Bruesewitz  v. Wyeth is about how this law should be interpreted in general, and more specifically, what this section of the law means -
No vaccine manufacturer shall be liable in a civil action for damages arising from a vaccine-related injury or death associated with the administration of a vaccine after October 1, 1988, if the injury or death resulted from side effects that were unavoidable even though the vaccine was properly prepared and was accompanied by proper directions and warnings.
While at first glance this passage seems to be as clear as mud, when you consider the backdrop of how product liability works it starts to make a certain kind of sense.

Product liability is the area of law that deals with how manufacturers (and others) should be held responsible for injuries that their products cause.  There are a few different types of liability but the relevant one for this case is strict liability.  Strict liability is the idea that a company is responsible for damage caused by their products regardless of any fault on their part.

Strict liability is different than other types of product liability, such as negligence, in that it doesn't matter how careful the company is or what steps it takes to prevent problems.  If it can be proven that a company's product caused the damage then the company can be held liable.  With this type of liability there are three basic types of claims that can be made.

The first type of claim is called a "manufacturing defect" and deals with injuries that are caused because of problems during the manufacturing process.  For example, if a vaccine was contaminated by something while it was being made or if a worker didn't add some ingredient when they should have then that would be considered a manufacturing defect.

The second type of claim is called "failure to warn" and deals with injuries that occur because a company failed to warn about a non-obvious danger where the injury might have been able to have been avoided if the user knew about the risk.  An example here would be the warning about kickback that comes on every chainsaw.  Kickback is what happens if you get the tip of a chainsaw too close to an object, such as the ground - the blade has a chance of kicking back (rebounding) in the direction of your body and causing serious harm.  A novice user might not realize the danger of that happening, hence the warning.

The final type of claim is called a "design defect" and deals with injuries caused by products that have a defective by design or products that cannot be made safe no matter what the design.  A example here might be a chair that was designed to only have three legs instead of four or a car whose brakes would fail to work when the car is going faster than 15 mph.

Now, if you look back at the snippet of the law above, you can see that it mentions all three types of liability I just talked about.  The question is how should the law be interpreted and what exactly was the intent of Congress in writing the law.

The laws says that if an side effect occurs even though a product was properly prepared (manufactured) and accompanied by proper directions and warnings then the company is not liable for that injury if it were unavoidable.

So, the case basically comes down to what an "unavoidable" side effect is.  My opinion is that the Supreme Court is basically going to find that a side effect is "unavoidable" if it is known that it can happen as a result of the vaccination and that there was no way to change the vaccine to prevent the injury.

Or to put it another way, if the product was properly manufactured and the possible risks are disclosed to the end user (or their parents) that the company is not liable if one of those side effects happens.

Bringing it all the way back to the current case, the seizures that Bruesewitz had were certainly a known side effect of the DTP vaccine as it was listed in the vaccine injury table of the original 1986 National Vaccine Injury Act and was still there up until a month before the Bruesewitz's initial claim was filed with the vaccine court in 1995.  There were no changes to the then-current vaccine that could have been made to prevent the injury.  Hence the possibility of seizures was an "unavoidable" side effect of using the vaccine.

Now, there is the second part of the argument - that Wyeth had a different type of vaccine that it could have used and that type of vaccine might have been able to avoid the seizures.  But that argument ignores the fact that the current vaccine was approved by the relevant agencies, was used properly, and (presumably) had the proper disclaimer pamphlet with it while the other vaccine was nothing more than vaporware.  The mere possibility that another type of vaccine existed did not make the side effect of this one avoidable.

As a result, I think the Supreme Court will look at the evidence, decide that the seizures were "unavoidable", and uphold the decision of the 3rd circuit court.  The only question for me is how far they will take it.  Will the ruling be a narrow one limited to only this case or will the Court attempt to set a general precedent that vaccine manufacturers have broad based immunity and the only forum for hearing injury complaints is the vaccine court?

Time will tell.

Thursday, December 9, 2010

Autism Prevalence Mashup

Perhaps the most important unresolved question today about autism is whether it is becoming more common.  Are we in the midst of an epidemic of autism or are social forces just making it appear that way.  The answer to this question has the potential to reshape how we think about autism and how we should deal with it.

If the rate of autism is not increasing then our focus should be on providing services and finding new ways to help people with autism live more productive lives.  But, if the rate of autism is increasing, then our immediate concern should be figuring out why and putting a stop to it.

While I don't think there is yet a clear answer to the overall question, I think it is safe to say that the number of children with a label of autism is increasing each year.  The problem is trying to figure out if this increase is real or not.

Since I think the question is important, I decided to take some administrative prevalence data from studies that I was reading and put them together to see what they looked like.  The papers are both about autism prevalence in Montreal, Canada and both use yearly administrative data from school boards to estimate the prevalence of autism.

There are several problems with what I am going to talk about below, so let me get those out of the way.  First, the general disclaimers about administrative prevalence apply - so yes, I know that there are problems with using this type of data.  Second, the papers used two different school boards so there is a problem with combining the data like I am doing.  But, since both of the school boards are in the Montreal area and both used the same definition of autism, I think the comparison has some relevance.

So, without further ado, I give you the first chart.  The years on the bottom are the birth year of the children.  Keep in mind that the age of the children is going from the youngest on being on the right (2002) and the oldest being on the left (1987).

Although, the birth years aren't really exact birth years but rather an approximation based on what grade the child was in.  So if a child was held back a grade or two as might be common for children with special needs (if that even happens in Montreal, I don't know), then the ages could be skewed.

The blue line represents the children from the first study and the green line represents the children from the second.  I indicated the point at which the children on both lines would have been eight years old.  That can be important because that is the age where we can assume that most children with autism have been recognized and given the appropriate label.

The red line is a three period moving average of both lines and represents the overall trend of the numbers.

(Click for a larger version)
I think there are a few notable things on this chart.

First, I think the overall trend is clear.  Younger children are more likely to have a label of autism than older ones and the number of children with an autism label is growing by about ten percent per year.

Second, notice that the prevalence goes up as the children get younger up until age eight when it starts to fall? This is what I was talking about above where younger children might not yet have a diagnosis, so we can assume that the numbers before age eight are lower than they should be.

Third, if you look at where the blue and green lines overlap, you might notice that the rate of autism in the children from the second study is about half of that from the earlier study.  For example, in 1993 the children in the earlier study were about ten years old and had a rate of about 71 per 10,000 but in the second study the children would have been 15 and had a rate of about 48 per 10,000.

As I have commented on before, it looks like there might be a substantial group of children who have a diagnosis of autism when they are younger but lose it as they get older.  This is the third independent data set where I have seen this relationship and I am starting to wonder about it.  If I am not mistaken, this rate is similar to the recovery rate that has been historically demonstrated for ABA.

Moving on, another nice thing about these two studies is that they gave a breakdown between the different types of autism.  One of the theories about the increasing rate of autism is that, as time goes on, there are more milder cases being recognized and that is partially responsible for the increase.  But, as you can see on the chart below, that didn't happen here.

(Click for a larger version)
Even though the average prevalence increased between the two studies, the breakdown of the types of autism is essentially unchanged.  The majority of autism cases here are PDD-NOS, followed by classic autism, and finally Aspergers bring up the rear.  And, as I talked about before, CDD is extremely rare with only 1 child having that label.

Take away from this what you will, I just found it to be interesting.  Or maybe this is a sign that I need to get a better hobby...


1. Fombonne, Eric, Rita Zakarian, Andrew Bennett, Linyan Meng, and Diane McLean-Heywood. 2006. “Pervasive developmental disorders in Montreal, Quebec, Canada: prevalence and links with immunizations.” Pediatrics 118:e139-50.  doi: 10.1542/peds.2005-2993

2. Lazoff, Tamara, Lihong Zhong, Tania Piperni, and Eric Fombonne. 2010. “Prevalence of pervasive developmental disorders among children at the english montreal school board.” Canadian journal of psychiatry. Revue canadienne de psychiatrie 55:715-20. Link

Tuesday, December 7, 2010

The Woo of Woo

Over on the blog formerly known as Countering Age of Autism there was a post a few weeks back that claimed to be a guide to help parents avoid "woo".  The premise of the post was that there are a lot of sites on the internet that try and sell treatments for autism and it can be difficult to separate the good ones from the bad ones -
How do we evaluate the claims of these products and prevent ourselves from (1) wasting precious financial resources, and (2) putting our precious children in harm's way? There are some key things that one can look for that indicate woo and pseudoscience. We don't have to be experts in a field; we just have to know how to evaluate claims and evidence.
The post continues with six tips on how to avoid bad treatments, aka "woo".  The tips start out with phrases to look out for such as "Natural", "Organic", and "Doctor recommended", continue on with an admonition about discounting testimonials, anecdotes, guided questionnaires, and illegitimate published articles, before finally ending with the suggestion that only people with an appropriate pedigrees can make a good product.

While I do agree with the overall theme of the post - that it is hard to determine whether a particular treatment is worth it - I have to disagree with the idea that all you need is a cheat sheet of things to avoid.

As anyone who has seriously looked into treating autism can tell you, it can be difficult to determine whether any treatment - mainstream or alternative - will be able to deliver on its promises.  And, even when you can establish that a treatment can work, it is still very difficult to know whether a specific treatment will work for a specific person with autism.  Take a well-supported, mainstream treatment like ABA - for some children it can do wonders and give them back their ability to function while others won't respond to it at all.

The problem is that, because so little is known about what autism is or what causes it, it is hard to know what exactly what will help in general let alone what will help a specific person.

In general, science understands very little about autism and, specifically, has no clue why some things will work for one person but not another.  "Woo" or "pseudoscience" has nothing to do with it.

Although, I have to say, I strongly dislike the idea of "woo".  Science is about the open exchange of ideas and is a methodology for trying to understand the world.  There is absolutely nothing about science that proclaims that the current understanding is "The Truth" and everything else is wrong.  If anything, the idea of "we know that isn't true" is almost the opposite of what science is about.  Science is more "we think this might be the case" but is willing to quickly change its mind if some new bit of evidence comes along.

Sure you will find people who cling onto an idea long past the point that there is any evidence supporting it, but that problem applies equally to those who think that they know what "Science Says".  As soon as you get too attached to the idea that you know something and consider the "other side" to be the great unwashed who worships woo, you have missed the entire point.  You have become the problem rather than the solution.

Arrogance is the antithesis of science.

So, rather than labeling something as "woo" simply on the basis of required legal disclaimers and marketing terms, I would suggest putting down the woo detector and using your head instead.  It is possible to develop a general understanding of a subject area without having to spend years and years becoming an expert.

It is important to develop this general understanding because, most of the time, the responsibility for treating a child's autism is left up to the parents.  Sure, in a perfect world you would have an expert medical team on your side that can evaluate your child's specific situation and come up with an appropriate care plan.  But the chances of that happening are remote.

The majority of time, parents are left on their own and have to sort through a large set of possible treatments and decide what is appropriate with very little guidance from medical "experts".

So, if you are a parent and want to treat your child's autism, you are going to have to develop at least a basic understanding of what it is that you are doing.  You will have to have a way to determine what is an appropriate thing to try and what is not.

I personally find it helpful to find out the answers to the following questions whenever I run across some new treatment option -

1. What exactly is the treatment?
2. What is it supposed to do?
3. How is it supposed to work?
4. Do other independent and reputable sources agree?

And then look at the specific reasons for trying this treatment with this child -

5. What specific problem am I trying to address?
6. Why do I think that this treatment will help with this problem?

Before finally getting to the problem of reputation -

7. Do I trust this specific company or entity to provide this treatment?

If I don't know or am uncomfortable with any of the answers to the questions then I would not try the treatment.

This list of questions doesn't just apply to those "woo" treatment like vitamins and probiotics but rather to any treatment that you are thinking of trying.  You need to take the time to understand what it is any why you would want to do it because it is unlikely that anyone is going to do it for you.

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: http://www.annalsofian.org/text.asp?2010/13/3/164/70873

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. http://dx.doi.org/10.1016/j.cell.2010.10.016.

Walsh, Ryan M, and Konrad Hochedlinger. 2010. “Previews Modeling Rett Syndrome with Stem Cells.” Cell 143:499-500. http://dx.doi.org/10.1016/j.cell.2010.10.037.

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. http://www.ncbi.nlm.nih.gov/pubmed/21063152.

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. http://pediatrics.aappublications.org/cgi/doi/10.1542/peds.2010-1023.

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.

Wednesday, October 27, 2010

Think You Have Autism? Don't Take a Quiz.

Over in the autism area on about.com, Lisa Jo Rudy posted something today where she talks about how taking the self-administered Autism Quotient (AQ) test might be a good first step if you think you have autism -
Of course, there is a disclaimer that these tests are not diagnostic, and they're only to be used for "genuine research." Still, for parents of children on the autism spectrum, adults wondering whether they might fall into an autism spectrum category, or anyone concerned about the symptoms of autism, these tests may be a useful first step in deciding whether or not to seek an evaluation.
This is very bad advice.

First of all, if you seriously think that you may have a disorder such as autism or any other mental disorder then you should seek professional help.  You should not try to take a test you found on the Internet to see if you might "fall into an autism spectrum category" or to give you a "hint".  None of the lists of signs symptoms on the Internet nor any of of the tests out there are going to be able to tell you whether you have autism.  Your "hint" should be that you think there is something wrong and that alone should spur you to seek a professional's opinion.

But lets say that you have decided to take Lisa's advise or that you, like many people before you, have decided that this test is an appropriate way to determine whether you have autism.   The question then becomes if you take the Autism Quotient test and score high enough, how likely are you to actually have autism?

It turns out that the answer is not very likely - the odds are about 1 in 10.

To say that the opposite way, if you had a group of ten people who all scored high (over 32), nine of them would not have autism.  So if you are claiming that you have autism based solely on a self-administered AQ test then you are most likely wrong.

To make matters worse, even if you score below that 32 number, you are still somewhat likely to have autism.  If you took a group of ten people who actually had autism, two of them would likely score below the 32 cutoff.

So either way the AQ isn't going to tell you that much.

To understand the reason the odds are so very much against you, you have to understand what the purpose of a test like the AQ is - and what it isn't.  A test like this is supposed to be used to help find people who are more likely to have a condition.  It is not supposed to be able to tell you that one specific person has the condition.

A test like this can be used as a screening tool in research to help researchers find the people who are more likely to have a condition so that they can focus on those people.  Or, if the test has been validated in earlier studies, researchers can use the results of the test to draw general conclusions about the people in their study.

In either case, to properly use the test you have to know how good of a job the test does at finding those who have a condition and eliminating those that don't.  These concepts are formally called sensitivity and specificity.  The sensitivity of a test tells you have good of a job the test does at finding the people who have the condition while the specificity tells you how good of a job the the test does at telling you which people don't have the condition.

In an ideal world, you would want every test to identify every person that has a condition (sensitivity of 100%) and exclude every person who doesn't (specificity of 100%).  But, in the real world, tests are never that accurate and we have to make do with what we can get.

When it comes the sensitivity and specificity, the AQ isn't the greatest but it isn't too bad.  According to a recent paper that I was reading, the AQ has been demonstrated to find 80% of the target group (sensitivity 80%) while only misidentifying 2% of the rest (specificity ~ 98%).

Which leads me to my next, point, what is it exactly that the AQ is supposed to be finding?  Here's a hint, it isn't what you normally think of as autism - "The Autism Spectrum Quotient (AQ) has been developed to measure the degree to which an adult with normal intelligence has autistic traits".  If you dig a little bit more, you would see that this test is meant to find adults who have "traits" of Asperger's or high-functioning autism.

Or in other words, this test is geared towards finding individuals who fall on a small portion of the autism spectrum but is not going to be very helpful in identifying the majority of people with autism.  Well, it won't be helpful  unless you believe that - all evidence to the contrary - the majority of people with autism are high functioning.

So far the AQ doesn't seem to bad - it should be capable of identifying the majority of its target audience.  But there is one last piece to the puzzle of understanding why the AQ isn't able to tell you much, and that piece is called the positive predictive value.  The idea is to take the sensitivity and specificity and put them in practical terms, and this value does that by telling you how likely it is that you have a condition if you have a positive value on the test.

This is where the AQ starts running into some serious problems - the positive predictive value is somewhere between 8% and 12%.  This means that even if you have a positive value on the test, you are only about 10% likely to have Asperger's or high-functioning autism.  The other 90% of the time the test is just wrong.

If that doesn't make any sense to you, perhaps an example would make the picture clearer.

Say you are looking at a group of 10,000 people and that we can assume that 1% of the people have any form of autism.  How many people will the AQ correctly identify, how many will it fail to identify, and how many will it falsely identify?

The first thing we need to know is how many of the cases of autism we would expect to be classified as Asperger's or high-functioning autism.  While there isn't a good answer to this question, I think it would be reasonable to assume that 25% of all of the people with autism fall into one of those two groups.  I suspect that the actual number would be less than this, but this number is good enough for this example.

So, with 10,000 people, we would expect 100 of them to have any form of autism and 25 of them to have Asperger's or high-functioning autism. Given what has been found in studies that looked at the validity of the AQ, we would expect that the AQ would correctly identity 20 of that 25 (80% sensitivity) and miss 5 out of the 25.  We would also expect that 2% of the rest of the population would be falsely identified as having Asperger's or high-functioning autism, or roughly 200 people.

If we put that all together, we would find that, out of the 220 people identified by this test, only 20 would actually be correctly identified and another 5 would be missed.  Hence the positive predictive value would be about 9.1%, which translates roughly to a 1 in 10 chance of being correctly identified.

Now, just to nitpick my own argument and be completely honest,  one possible source of error in the above analysis is what the AQ would show for the 75 other cases of autism.  Would it be able to label them as having autism or would it miss them as well?  The short answer is that we don't know because this test has never been validated in this population.  No published research has shown how well the AQ does at detecting classic autism, PDD-NOS, Retts, or CDD in a large group of people and, without that information, it is simply impossible to know how well it would perform.

But, for the sake of argument, lets assume that the AQ works the same for every person with autism rather than just the higher functioning ones.  If you use the same assumptions that I used above, you would find that a positive result in the test would give you a 1 in 3.5 chance (or about 30%) of actually having autism.

The bottom line is that even if you get a high score on the Autism Quotient you are not likely to autism.   So if you think you might have autism, don't take a random test on the Internet - go talk to a professional instead.

Saturday, October 23, 2010

The Misuse of Labels

When talking about practically any subject, we use certain words or phrases to represent another, more complex topic. If you had to fully articulate a complex subject each and every time that you wanted to talk about it, you would be unable to express any complex idea in a reasonable amount of time, which would be a bad thing (unless you are an Ent).  So these shortcut are necessary to have any sort of real conversation.

When you take this idea of shoving a series of ideas behind a single work or phrase and apply it to medicine or child development, what you get is called a label. The purpose of the label is to describe a complex condition and wrap it up in a single word that fits nicely into a sentence. That way you don't have to say a child has "impaired social interaction and communication skill, restricted and repetitive behaviors, and potential sensory issues" all of the time, you can simplify that and say that the child has autism.

But there is the problem with the labels.  They only work as long as everyone has the same idea of what they mean. If you have a group of people who start using the label to mean something else or attach their own custom meanings to the word then the entire idea breaks down and all you are left with is confusion.

Take for example the the label of "gifted" as it is applied to a child. This label is relatively straight forward and means that the child is very intelligent or talented or, as the National Association for Gifted Children puts it -
Students, children, or youth who give evidence of high achievement capability in areas such as intellectual, creative, artistic, or leadership capacity, or in specific academic fields, and who need services and activities not ordinarily provided by the school in order to fully develop those capabilities
The "gifted" label is not that complex idea. Yet there are those who take a relatively simple label and seem to feel the need to make it into something that it is not. A perfect example of this is an article published in the New Scientist called Prodigy psychologist: The gifted child's curse. From the first paragraph -
When children are labelled as "gifted" we like to think the world will be their oyster when they grow up. Be very careful, warns British psychologist Joan Freeman. As she explains to Alison George, her 35 years of studying children with extraordinary abilities has revealed that the label has as many negatives as positives
The rest of the article continues in the same vein, but what is missing from it is what is negative about the label "gifted". The psychologist being quoted describes many problems with how parents react to the label or how gifted children don't always go onto to be successful as an adult. All of these "negatives" describe how people's reaction to the label might be less than ideal or how having a certain high level of intelligence doesn't guarantee success.  But none of these negatives have to do with what the label represents - being "gifted" is not a negative.

I think the problem comes about because people are unable to separate the characteristics of a label from the person themselves. A label just describes one part of who a person is and is not meant to describe every facet  of a person.

Just because you are "gifted" does not mean that you are a hard worker or that everything is going to be easy for you. Nor does it mean that you will have the perfect parents who will provide the optimal learning experience to bring out your exact talents. These are larger issues that need to be dealt with in the context of being a person and are not explicitly tied to the idea of being gifted - you can still have these issues without being gifted and being gifted does not mean you will have these issues.

On the flip side, you have a label like autism where people try and take what are mostly negative attributes and make it into a positive. When you look at what goes into the label of autism, you will find a set of characteristics that everyone can have little bits and pieces of but, in autism, are taken to unhealthy extremes.  That is what the label autism means - there are issues with communication, social, and restricted interests that are severe enough to cause major problems.  None of the attributes that go along with the label "autism" are a good thing.

But just because you have a label of autism does not mean that you are just a set of negative characteristics- there is much more to a person that just a label of autism.  A person with autism can be smart, funny, loving, caring, or any of the other traits that can apply to any other person.  The autism label just describes one small part of who a person is.

However, there are a small number of people who are attempting to hijack the autism label and make it mean something completely different.  Perhaps the best known of this group are the "aspies" who are trying to turn the label Asperger's into something that it is not. Lets be clear here, the Asperger's label is part of what is know as the autism spectrum and, as such, is a form of autism.  But if you listen to what these aspies have to say, they will tell you that Asperger's is not autism.  They will tell you that Asperger's is about being highly intelligent, dispassionate, and being neurodiverse.

But that is not what the label of Asperger's means.  Having Asperger's does not means you are automatically intelligent or dispassionate and not everyone who is technologically proficient and social awkward has Asperger's. You can still be intelligent and have Asperger's but one does not means the other.

You may think this entire discussion is moot and pointless but I think it matters a great deal. As I have talked about in the past, many of those seeking to turn the label of autism into something that it is not are doing so on the backs of those who are more disabled.

The end result of this hijacking of the autism label is you have people like Ari Ne'eman talking about how "autistic people" don't want to be cured, or Michael John Carley saying that they find the idea of being lumped in with lower functioning people with autism "hard to shallow" because they sometimes have to wear adult diapers, or Hannah Fjeldsted saying it would be "an insult and a mockeryto be lumped in with the lower functioning because aspies have their pride to think about.

And this insanity is not only limited to fringe people like this, it is slowly spreading to more reputable places like WebMD -
Some traits that are typical of Asperger's syndrome, such as attention to detail and focused interests, can increase chances of university and career success. Many people with Asperger's seem to be fascinated with technology, and a common career choice is engineering. But scientific careers are by no means the only areas where people with Asperger's excel. Indeed, many respected historical figures have had symptoms of Asperger's, including Wolfgang Amadeus Mozart, Albert Einstein, Marie Curie, and Thomas Jefferson.
There are so many things wrong with the paragraph it isn't even funny. People with Asperger's aren't focused on details, they are obsessed with certain specific ones and not in a good way (Restricted repetitive and stereotyped patterns of behavior, interests, and activities anyone?). Nor is there an automatic relationship between technology and Asperger's - that is a myth. And don't even get me started on the absurdity of saying that historical figures could have had Asperger's because of certain characteristics that appear in writings about them.  All of the labels are based on a set of characteristics that appear to a greater or lesser extent in all people but having some similar characteristics does not mean you have "symptoms of Asperger's".

I have no idea when this nonsense starting appearing on WebMD but it certainly is evidence that the attempted re-branding of Asperger's and, by correlation, autism is taking hold. Unfortunately, these ideas create an image of autism that those who are more severely affected will never be able to live up to.  Maybe the solution is to remove the Asperger's label from the rest of the spectrum and let the aspies redefine it to mean what ever they think it means this week.

But regardless, the point is that when using a label you have to use it correctly.  You have to be able to separate out the characteristics that it implies from the person as a whole. Each and every person is much more than the sum of their labels and just because a person has a specific label does not mean that they are limited to being just the label. A person is a person, not a label.

Wednesday, October 20, 2010

Jaundice And Autism

Earlier this month, a study was published in Pediatrics that suggested that there might be a relationship between neonatal jaundice and autism.  After reading the study several times, I think I can best sum it up as a little weak and very confusing.

In this study, researchers examined the electronic health records of at all 733,826 children born in Denmark between 1994 and 2004 and collected data on a variety of factors.  These factors not only included whether the child had jaundice or one of several developmental disorders but also included data on their birth weight, gestational age, fetal presentation, apgar score, demographic information about the parents, and other factors.  Or, in short, they collected a lot of data.

The researchers found that almost 5% of the children in the study had a diagnosis of neonatal jaundice noted in their medical records.  As would be expected, these children were more likely to be born premature (36 weeks or earlier) by a margin of 43% to 4.4%, more likely to be underweight - 53% to 14%, and more likely to have an irregular fetal presentation - 29% to 17%.  I don't know if any of these relationships are statistically significant as the study does not say, but I don't think that really matters as none of these relationships are controversial.

Moving onto the autism side of things, the study found a total of 1,721 children who had a diagnosis "in the spectrum of disorders of psychological development".  This spectrum included disorders of speech, motor, and social development as well as autism and intellectual disability (ID).  In this group, there were 577 children that had a diagnosis that put them on the autism spectrum and 1,239 children that had intellectual disability.  There were 74 children in this group that had both intellectual disability and autism.

The researchers crunched the numbers and found some rather peculiar results.  Jaundice was found to be associated with autism but only in full term infants.  To make matters more confusing, this association partially disappeared when the children were separated out by the time of year that they were born (summer vs winter) and whether they were first born or not.  Children with jaundice who were born in the summer or who were first born did not have an increased risk of autism, while children born in the winter or were not first born did.

As I said, I find this result to be rather confusing.

The lack of association between jaundice and autism in premature children is odd.  Children with jaundice are much more likely to be premature and premature children are more likely to have autism.  The numbers found in this study bear that out - 43% of the children with jaundice were premature and prematurity is more common in the children with autism (7.8%) than the general population (6.3%, 4.4% in those without jaundice).  Intuitively it seems like there should have been a relation there, but there wasn't.

The authors try and explain away the time year effect by exposure to sunlight and hence vitamin D levels, but, while that sounds good, there is no demonstrated correlation between vitamin D and autism.  Similarly, they try to explain the order of birth effect by differences in hospital discharge policies and maternal antibodies in second and later pregnancies.  I don't find any of these reasons convincing as I like to see actual data behind assertions rather than just magical thinking.  Although, to be fair, some studies have hinted that there might be a seasonal bias with autism.

I have to question how significant the association found is.  It is one thing to say that there is an increased risk but the actual significance of the association rests on the count of cases.  So I would have liked to see the actual number of children who had autism and jaundice but the only figures provided are hazard ratios (HR).

Not to get too technical, but this hazard ratio, which is basically a relative risk, provides an estimate of how much higher the (relative) risk of the outcome (autism in this case) is if the child had exposure to what was being measured (jaundice) when compared to those who were not.  So in this case, an HR of 1 would mean equal risk while an HR of 2 would mean that the children with jaundice were twice as likely to have autism than the children who didn't have autism.

The overall unadjusted HR for all children with autism was found to be 1.84 while that number dropped to 1.56 after being adjusted for maternal smoking, apgar scores, mother's citizenship, birth weight, and congenital malformations.  So we aren't talking about a large increase of risk.  But perhaps more telling is the ranges of these values.

At the risk of getting a bit technical again, the study says that the 95% confidence intervals for these figures are 1.05 to 2.69 and 1.05 to 2.30, respectively.  This confidence interval basically means that we would be 95% certain that the "real" value of the HR would be between these values.  These values represent a rather large range - from no increased risk to about 2.5 times the risk - which suggests that the increased risk are based on relatively few cases.  A result based on a fewer cases or, more appropriately, on a a small difference in the relative number of cases, would be weaker than a result based on a larger number of cases or a larger difference.

A crude example here would be if the unexposed group had 1 case in a group of 10 while the exposed group had 2 cases in a group of ten.  In theory, the exposure group would have twice the risk but in practice that risk could shift drastically if you looked at a larger sample.

And, speaking of relatively few cases, consider the total number of children with autism in the study.  In ten years only 577 children with autism were born in Denmark?  That would equate to a rate of about 7.8 per 10,000 which is extremely low when compared to the 91 per 10,000 recently found in this country.  This isn't data from the 80s or early 90s when you would expect to see this rate of autism, this data was from the late 90s and almost halfway through the 2000's.  It it possible that the 577 number would increase over time as the children aged (the youngest children in the study would have only been a little over 3 when the data was collected), but still, if you considered all of the children found to have a disability included in this study, we are still only talking about 23.5 per 10,000.

Either there are simply fewer cases in this country or the majority of children with autism have been missed.  If it is the first reason, then I would have to wonder at how applicable these results would be the world and, more importantly, why researchers aren't trying to figure out what is different about this country.  If it is second, then the association found would likely be flawed as well.

So, as I said at the beginning, the results from this study are confusing.  If I had to guess, I would think that the association found wasn't real, but that is just my opinion.  The only way to know for certain would be to do more studies.


Maimburg RD, Bech BH, Væth M, Møller-Madsen B, Olsen J. Neonatal Jaundice, Autism, and Other Disorders of Psychological Development. Pediatrics. 2010 Oct 11. [Epub ahead of print] PubMed PMID: 20937652. doi: 10.1542/peds.2010-0052

Sunday, October 17, 2010


Today was a good day.

The day started off well, with the children sleeping through the night until their typical wake up time of about 6 AM. Twin B came in first this morning, which is a bit unusual, and asked for the TV to be turned on.  We managed to put her off for about a half hour before we gave in and turned it on for her.

You see, Twin B has this thing were she has to have constant noise (preferably electronic) in the background and she has this other thing with the word "no".  For the past few months, whenever you tell her "no" she immediately goes into full meltdown mode and tantrums for the next twenty to thirty minutes.  When you combine denying her one of her "stims" plus the word "no" you get a somewhat volatile situation.

Fortunately, we managed to avoid the meltdown this morning after using the dreaded "no" word and only had some minor crying off and on for the next 25 minutes before she finally calmed down enough that we could give her want she wanted.  In our world, this is called progress.

You might ask yourself why we would risk a meltdown at 5:30 in the morning (when we were still sleeping), and the answer is simple.  My daughter has autism and we have to do everything possible to help her get past it.  We don't have the choice of trying to help her get past the problems some of the time and not others - consistency is one of the keys to overcoming the obsessions of autism.  And before you say that it doesn't matter, it does.  She has to be able to accept the someone telling her "no" and she can't assume that every if there is a TV in the same room as her that it will be on.  She has to be able to function in the world even if it isn't exactly to her liking.

The rest of the morning was fairly uneventful, with only a few hiccups.  The twins did their typical trick of only grazing on  breakfast while Baby C showed some (cough, cough) "spirit" in an attempt to get my cup of coffee.  For some reason, she really likes coffee but, while that isn't too bad, dealing with a three year old strung out of coffee isn't my idea of a fun morning.  I let her have a few sips before cutting her off and being treated to her trademark "try again".

That last bit takes a little explaining.  While my youngest is higher functioning than her older sisters, she is still somewhat limited in her ability to communicate and much of her speech is scripted.  She tends to reuse phrases that she has heard other people use, although she does use them in an appropriate manner.  Since she has heard the "try again" many times from her therapists when she gives an incorrect response, she has decided that that is the appropriate way to answer us when we give her an answer that she doesn't like.

So when I say "no more coffee", she replies with "try again".

It might not be the typical parent/child interaction, but hey, its communication.

A little later on in the morning, Twin A started getting upset for some reason.  It took about fifteen minutes and a small tantrum before my wife's mind reading abilities kicked in and she was able to figure out what was wrong -  the child was bored and wanted something to do.  So we got out the paints and some other art supplies and let her go to town.  Problem solved (except I am going to have to clean the paint off the walls later on tonight).

You might ask why Twin A didn't just ask to paint, and the reason is again simple.  While the twins definitely have the basic communication skills to ask for something when they know what they want, they aren't to the point yet were they are able to express an abstract though or idea such as "I want to do something but I don't know what".  Hence the agitation and the small tantrum.  Irresistible desire to express, meet (almost) immovable communication block known as my daughter's form of autism.

After lunch came the highlight of the day.  We took an outing as a family to not one but two novel places.

First we went to a fish store to buy some supplies for the fish tank and to let the kids look at the fish - they all love fish (no idea why).  That part of the trip went relatively smoothly with only a few bumps transitioning into the store.  The twins were a little stressed by the new environment - we could tell because they were walking around with their hands over their ears - but soon enough they were jumping and waving their arms in front of the fish tanks.

As an aside, if you have never seen two children jumping and hopping through a store while holding their hands over their ears and flapping their elbows, you have to see it.  While most of the people in the store glared and seemed to want to say "what is wrong with those children", we have to laugh because of how much fun they are having and how cute they look.  Besides, it wasn't all that long ago that they refused to even walk on their own while out in public, so hopping is progress.

Anyway, we stayed in the store for a good fifteen minutes before we noticed the tell-tale signs of increasing agitation and took that as our cue that it was time to go.  It got a bit touchy as Twin A wasn't quite ready to leave but her sisters were more than ready.  As we headed to the door, she did her typical bit of dropping to the ground and shouting and I had to resort to picking her up and carrying her out of the store.

The second trip was to a restaurant that we had never been to before.  It is very hard to find any restaurant that not only has food that the twins can have - they have food intolerances - but that also has food that they are willing to eat.  They are picky eaters and are adverse to trying anything new (yet another thing that we are working on).

Baby C is easier because she does not have any food intolerances and she is typically happy to try new food.  However, today she decided that she wanted nothing to do with new food or with a new restaurant and felt the need to share her displeasure with the entire restaurant.  She started crying the minute that we were seated and finally managed to calm down shortly after we placed our orders.  After that, the rest of the meal went well and, much to our surprise, the twins actually ate what we ordered for them.

After the restaurant we even managed to take a short walk around town before returning to the car and returning home.  I guess that actually make three novel environments for the kids today - a new family record.

As I said, today was a good day.  Today we helped our daughters deal with their obsessions, communicate a little better, and cope with the stress of the unknown.  Or, in short, today we helped them overcome just a little bit more of their autism.

Today we all had a good day and enjoyed ourselves in the process.

But today was not a day without autism.  I don't know if we will ever again have a day without autism.  Almost every single thing that we did today was carefully laid out and planned with autism firmly in mind.  With three children on the spectrum, we do not have the luxury of ever forgetting for a moment that our children have special needs because if we do, the day will not go so well.

But such is the life of an autism parent.  As much as I wish that my children did not have to struggle with autism they do, and there is nothing that I can do to change that fact.    My children have autism and I, like many other autism parents, will do whatever it takes to help our children get past the difficulties that autism can cause.  We will give up our ambitions and goals and completely change our lives in the hope of making a better future for our children.  We do this not because we are trying to make our children into something that they are not but rather because we want them to have the best chance possible of overcoming their autism.

By now, you must be wondering what the point of this entire post is, so here it is.

Being an autism parent can be a tough - and sometimes thankless - job, far more so than being a parent to a "typical" child.  If you are lucky, your efforts will be rewarded when your child is able to function on their own in spite of having a disability like autism.  If you aren't, then you worry about who will take care of your children once you are no longer able.

As I said, it is what it is.  But, given all of that, there are people out there who seem hell bent on making our job harder.  I am talking about people like Suvi-Tuuli Allan who don't seem to know what they are talking about and say things like this -
@TannersDad: We can save more children if we cure the parents. #autism
and this -
@TannersDad: I was being sarcastic. WTF is a profound autism anyways?
and this -
Finding a cure for #autism is all about parents trying to make their kids "normal" so they can be proud of their productive little NT kids.
The first time I ran across people like this,  I was flabbergasted.  Lately, I have just been getting annoyed with their ignorance.  So let me just make this simple for all of the children like Ms. Allan who seem to think that they understand exactly what being an autism parent is like.

Shut up until you manage to grow up and learn what the hell you are talking about.