Sunday, October 30, 2011

Moving the Chains

Yesterday morning we woke up to two very surprising things.  First, in what is very rare event in our area in October, it had snowed overnight and there was snow on the ground.  Second, our youngest daughter C noticed the snow and decided to talk about it.

My wife and I woke up to C banging on the window in our bedroom and saying "Its snowing!  I want go outside and play in snowman!"  At first I thought I was dreaming because the youngest hasn't been talking to us much lately and, while she can and does use short sentences to communicate, she has never strung together three different ideas in one burst of communication.

Of course, we did get her dressed and let her go outside to play in the snow.  And a little while later, with Mom and Twin A's help, she built her first snowman.  (Twin B, as usual, took one look at the snow, decided that it looked way too cold and wet, and hid in her bedroom.)

But, like always when it comes to autism, I can't help but wonder why.

Why was C able to put together three different ideas and express herself at that moment in time?  It certainly isn't the first time that she has seen snow nor has she ever been particularly excited by it in the past.  Why this time?

If this is the level at which she can talk, why doesn't she more often?  She is certainly a very opinionated little girl and is quite often put out that we can't guess what is on her mind.  If she has the ability to tell us exactly what she wants, why doesn't she?  Is it that she normally can't or that she won't?

All of which inevitably leads to the question of whether this group of sentences was the emergence of a new skill/ability for her or whether it was one of those strange flashes of skills that you see in children with autism.  Is she going to start expressing more complex ideas or was this just a glimpse of what lies beneath the surface of her autism?

Of course, there are no answers to any of these questions.  Only time will tell if C is breaking through the blocks of her autism or whether this was just a fluke.  In the meantime all we can do is keep trudging along down the field heading for the end zone.

And making snowmen when she she asks for them.

Tuesday, October 25, 2011

Lung Abnormalities in Children with Autism?

I have no idea what the significance of this could or would be but a presentation at CHEST 2011 suggests that children with autism might have a strange abnormality in their lungs.  From a summary of the finding in U.S. News & World report -
In a typical lung, the windpipe, or trachea, branches into two main stems. From there, airways branch off the stems much like tree branches in a random, asymmetrical pattern, said Stewart, a pediatric pulmonologist at Nemours Children's Clinic in Pensacola, Fla.
But in the autistic children, those branches were instead doubled up and symmetrical. And the branches were smaller -- whereas in a normal lung you might have one large branch jutting off, in the autistic child, she'd see two, smaller branches instead.
The abstract of the presentation is below.

Can Bronchoscopic Airway Anatomy Be an Indicator of Autism?
Barbara Stewart, MD
Nemours Childrens Clinic, Pensacola, FL

PURPOSE: The purpose of this study is to investigate possible correlation between certain airway anamolies and a definitive diagnosis of autism and/or autistic spectrum disorder.

METHODS: IRB approval was obtained for a restrospective study to evaluate 49 patients with a diagnosis of autism or autistic spectrum disorder. These patients were seen in the pulmonary clinic with a diagnosis of cough that was unresponsive to therapy and who required further pulmonary work-up. Bronchoscopic evaluation of the airway was included as part of that work-up.

RESULTS: Bronchoscopic evaluations revealed the presence of initial normal anatomy followed by double take-offs in the lower airway (or "doublets") in 100% of the autistic population studied.

CONCLUSIONS: There appears to be a correlation between autistic spectrum disorder and airway anatomy. This is a small study of 49 patients. More investigation is warranted.

CLINICAL IMPLICATIONS: At present autism is diagnosed through subjective observation of "autistic behaviors." Autistic children with cough may be diagnosed objectively.

DISCLOSURE: The following authors have nothing to disclose: Barbara Stewart, Barbara Stewart

No Product/Research Disclosure Information

doi: 10.1378/chest.1120025

Thursday, October 13, 2011

A Critical Look At The Level and Nature of Autistic Intelligence

As I mentioned a few days ago, Michelle Dawson et al published yet another paper on "the level and nature of autistic intelligence".  I didn't go into any details about the paper at that point - even though I had read it and had started writing this post - because it had disappeared from the journal's website and I wasn't sure what it was going to be in when it came back.  Well, the paper is back and since Ms. Dawson was kind enough to call me a "renowned blogger" I thought the least I could do was give the paper a serious look.

I am actually going to be talking about two papers by Dawson et al - "The Level and Nature of Autistic Intelligence" and "The Level and Nature of Autistic Intelligence II" - because they use some of the same underlying data and they talk about the same idea.  The text of both papers is freely available, here and here, so if you are really interested in the subject I suggest that you read them for yourself.

With that said, the basic premise in both papers is to that people with autism are actually more intelligent than is commonly thought.  Conventional wisdom (and science) holds that people with autism are often intellectually disabled and, even when they aren't, have intellectual challenges that places them at a disadvantage to a "typical" person.  These papers try to show that people with autism have a different way of thinking and that it isn't so much that they lack intelligence but rather it is the tests that are used to measure their intelligence that are lacking.

Or, in the words of the of the second paper, "autistic spectrum intelligence is atypical, but also genuine, general, and underestimated".

As I said before, in some ways I completely agree with that statement.  Conventional intelligence tests rely on certain abilities, such as the ability to understand verbal communication and a ready understanding of the environment, and are very challenging for people with autism.  A person with autism might very well score lower than a typical person because they have problems with certain core skills, have problems focusing, or have sensitivities to the immediate environment, not because they lack intelligence.

But that is the nature of the disorder called autism - it disrupts a person's ability to function in a "typical" manner.  It doesn't necessarily mean that they lack intelligence but it makes the application of that intelligence difficult.

Getting back to the papers, in both papers the authors gave two different intelligence tests (not really, but more on this in a minute) to several groups of children and adults who either were "typical", had autism, or had Asperger's.  The first paper focused on children and adults with autism while the second focused on children and adults with Asperger's.  In each paper, there were four groups - typical children, typical adults, children with autism/Asperger's, and adults with autism/Asperger's.

Some of the "typical" children and adults were in both papers although it is never spelled out exactly how many were in both or whether they were retested for the second paper.  That last bit is important because the way the IQ tests were administered differed between the papers.  So if the data from the first paper was just reused in the second then it might have skewed the results of the second.

All of the groups were given two different styles of intelligence tests, the Wechsler Intelligence Scales III and Raven's Progressive Matrices.  The children were given the Wechsler Intelligence Scale for Children (WISC-III) and the adults were given Wechsler Adult Intelligence Scale (WAIS-III).  All of the participants were given the standard form of Raven's Progressive Matrices.  There are two other forms of the Raven's test, including one that is meant for younger children or children with learning disabilities.

There are two main differences between how the tests were administered between the papers.

In the first paper, the Raven's test was given to all participants with no time limit whereas in the second paper, the standard time limit (40 minutes, I think) was applied.  I think the impact on the scores from that difference would be obvious.

The second difference is that the tests in the first paper were scaled according to North American norms while in the second paper Canadian norms were used.  This is a little bit obscure, so let me explain.

The basic idea with modern intelligence tests is to give a bunch of questions and then score the number of correct answers.  But since this raw score does not really tell you anything meaningful, these scores need to be translated into some more useful form, such as an IQ score or a percentile.  To do that, the test scores are "normalized" by giving the test to a large number of people and then using the resulting scores to establish what the typical score is and what range of scores would be expected to be.  The typical score is set to be an IQ of 100 (50th percentile) and 1 standard deviation is set equal to 15 IQ points.

This picture from wikipedia might make the idea clearer -

So the problem is that the two papers used two different sets of translations from the raw test scores - North American norms and Canadian norms - and that there are differences between the mappings.  So you cannot directly compare the final results without first recalculating the result using the proper normal ranges.

So was the "typical" data that was reused in the second paper re-normalized with the Canadian norms or was it kept under the North American norms?  And were the comparison charts from the first paper that were included in the second paper (i.e. Figure 1) adjusted as well?  After reading both papers several times, I still can't say one way or the other for certain.

But let's set that aside for now and consider the intelligence tests that were used - Raven's Progressive Matrices and Wechsler Intelligence Scales for children and adults.

The Raven's test is a an old and somewhat simple test that presents a series of progressively more difficult visual puzzles.  The visual puzzles take the form of shape that has a piece missing and a set of possible answers.  This site has an example of what one of the questions might look like.  The person taking the test has a fixed amount of time to answer as many of these puzzles as possible.

The Raven's tests were initially based on the idea that intelligence was a single, unified general ability.  Under this model, you either had "intelligence" or you did not.  But like all primitive models, this idea of a single unified intelligence has been gradually replaced by the idea that there are many different types of intelligence and that a person is going to have a varying level of intelligence depending on the exactly what part of their intelligence you are measuring.

Which is where the Wechsler tests come into play.  These tests attempt to measure the different types of intelligence by the use of different sub tests, each with a specific focus.  Under this this newer model of intelligence, Raven's test is no longer measure thought to measure "intelligence" but rather one subtype of intelligence called fluid intelligence.  Fluid intelligence is the ability to think logically and solve problems in novel situations, independent of acquired knowledge

So on one hand you have the Raven's test that is measuring the ability to think logically and solve problems and on the other you have the Wechsler tests that are trying to measure actual abilities and the ability to apply what you know to a given situation.

I don't want to go into and more details about the differences between the tests because that would take a long time and I am nowhere close to an expert (or even that knowledgeable) on the subject.  If you are interested in the differences between the tests or the history and current theories of intelligence, I suggest starting with the Wikipedia entry on the subject and working your way outward from there.

But let me just say that if you have spent any time with children who have even moderate autism, you would know that the differences between these two tests highlight one of the core challenges of autism.  That being  while it can be challenging to teach a child with autism it is equally, if not more, challenging to get the child to apply what they know to a given situation.  There is a very large gap between being able to learn, actually learning, and being able to generalize that knowledge.

But getting back to the papers, the core data point from both paper is that, while the Wechsler test shows a fragmented and uneven profile of intelligence in people with autism, the Raven's test often shows a significantly higher level of intelligence than the Wechsler in the same group.  Furthermore, this significant difference is not present in "typical" children and adults.

So the authors concluded that, since the Raven test is thought to measure a more general form of intelligence, the difference between the two tests represents a problem with how the Wechsler tests measure intelligence with respect to people with autism.  They concluded that the Raven test is a more accurate measure of true "atypical" autistic intelligence.

As I said, I agree with this idea up to a point.  But (you knew that was coming), there are quite a few problems not only the idea in general but also with the data in both papers.

As I alluded to above, this interpretation ignores the fact that people with autism (and children in particular) have a hard time with the generalization of knowledge.  It is one thing for them to know something when you are teaching it to them and asking highly structured questions, it is quite another for them to be able to take that knowledge or reasoning and apply it in a novel situation.

Another problem is that this interpretation ignores the widely accepted idea that people (and again children in particular) with autism have what are called splinter skills.  Splinter skills are what happens when a person has uneven development of skills and are substantially behind in some areas, ahead in others, and at the appropriate level for the rest.  So instead of a person having a fairly even level of skills, they would be have an extremely uneven level of skills.  For example, some children with autism will learn to read before they develop receptive or expressive verbal skills.

You can see evidence of splinter skills in the results from the Wechsler test.  You can also see it very clearly if you give a child on the spectrum a developmental test such as the Battelle.  So the data from the Wechsler and Raven's tests could easily be yet another example of splinter skills.

In my opinion, if you combine these two ideas, you could say that one of the core traits of autism is an uneven level of skill and difficulties in applying those skills.  The other core traits are an extreme difficulty in teaching skills in the first place (at least in some people) and the behaviors of autism.

But let's set all of the above aside. Let's assume that all of the data is in the proper terms and let's assume that the difference between the test values can't be explained by known properties of autism.

The next question is whether what the two tests measure is an equally valid view of intelligence or whether the tests measure different things.  Can we really look at one repetitive test of intelligence and assume that it better represents potential intelligence better than another test?

I think the answer is obvious, each test provide a different view of a person's intelligence.  But to arrive at a true measure of a person's intelligence you have to consider all of the available evidence.

The next follow up question is whether the end results of the tests are directly comparable.  Does a final score of the 80th percentile on one of the test mean the same thing as an 80th percentile test on the other?  For this to be true, both tests would have to be an equivalent measure of a person's intelligence, i.e. they would both have to measure the exact same thing.

I think it should be obvious by now that they don't, so I think that you would have to be careful in directly comparing the results between the two tests, doubly so if you wanted to do any calculations based on the numbers.

But again, lets set that aside for now and look at the actual data underlying the papers.  I normally don't like to criticize the presentation of paper directly, but if I had to describe the data in these papers I would call it sloppy and disorganized.  There are numerous inconsistencies in how the data is presented, a few blatant mistakes, and neither paper gives a clear view of what the data actually is.

Just to give you an idea of what I am talking about.

In the first paper, there is no table that summarizes the data, you have to piece the individual pieces together from the text.  There are figures that are presented without any real description of what the data is, such as Figure 1 that says it presents "mean subtest scores" but then charts percentiles.  I have to wonder what the percentiles are of, correct answers or normalized results.  And the data in figure 1 is presented only for one of the four groups in the paper which begs the question what the other groups look like.

In the second paper, there is a table (Table 1) that presents some of the data.  But then that data is contradicted by the first figure in the results section and that figure is central to the results being presented.  You would think that someone would have checked that.  Later in the paper you are directed to non-existent figures.  And again, you never are presented a clear view of the data that is being discussed.  Some of the data is contained in the table while other parts of it are presented only in the text and then you only get to see one small part of the data.  And then there is another strange chart, Figure 2, that presents data that is similar to the Figure 1 in the first paper but instead of means or percentiles presents scaled scores.  And, again, the data for the other groups in the paper are left off.

I could put together a better presentation of the data and that is really saying something.  But after sending several quality hours going over the papers and trying to put all of the pieces together, I have some concerns about how the data was actually analyzed.

The main result in both papers was that the percentile difference between the Wechsler and Raven's tests was significantly larger in most of the autism/Asperger's group than it was in the "typical" groups.  Most of the groups (with the exception of the Asperger children) did better on the Raven's test than they did on the Wechsler.  But the the Asperger adults and both the autism groups showed a significantly larger improvement than the others.

Which leads me to my main problem with the data - how the difference was calculated.  To put the problem simply, you cannot accurately compare the difference between two percentiles and get a meaningful result because percentiles themselves are not linear.  I think I can illustrate this best with an example.

If I have two numbers - 5 and 1 - that represent the differences between two sets of percentiles (50 and 55, 98 and 99), which one would you assume represents a greater change in intelligence?  The obvious answer is of course 5 - the change from the 50th percentile to the 55th percentile.

You would assume that a change of 5 percentiles always represents a greater change in intelligence than a change of 1 percentile.  But in this case you would be wrong, the increase from the 98th percentile to the 99th percentile represents a greater change in intelligence than the 50th percentile to the 55th percentile does.

You can see this if you change the percentiles into IQ points (see above).  The 50th percentile represents an IQ of 100, the 55th an IQ of 102, the 98th an IQ of 131, and the 99th an IQ of 134.  So the 5 percentile change equates to a change in IQ of 2 while the 1 percentile change represents a change in IQ of 3 IQ.

The reason for this discrepancy is that percentiles, at least as they are used in this paper, are meant to provide a relative ordering of everyone who takes a particular test.  So scoring in the 80th percentile means that you did better than 80% of the people who took the test and worse than 20%.  The percentiles do not tell you anything about the magnitude of the difference between the groups.

So, even if you had a set of percentages that are all from the same test, you could not subtract them and do anything meaningful with the results.  You cannot take a set of differences and order them from the smallest to the largest (which is required for the statistics used in the second paper) because you do not know which change in percentile represents a larger change.

The first paper's main conclusion is in doubt because the statistics not only assume the ability to order the results, but also assume a linear scale and a normal distribution of the data.  Even a quick look at the statistics shows that the distribution cannot be normal (e.x. range 0 to 100, mean 36, SD 26) and the differences aren't ordinal let alone linear.

The second paper at least used statistics that did not depend on a normal distribution.  But even still, the main statistics depends on the data being ordinal.

So when the second paper says this in the results section -

"The Asperger adults demonstrated an advantage of RPM over Wechsler FSIQ that was significantly greater than that of the non-Asperger adult controls, Mann-Whitney U=366.5, p<.01"

That statement is completely unsupported by the data.  In pure numerical terms, the difference might seem to be larger, but in terms of actual increased of intelligence that statement is very much in doubt.

Another quibble with the results is the use of averages (means) to represent the group rather than a median.  If you have a set of non-linear values such as these percentiles, if really isn't valid to take an average because it is going to misrepresent where the middle of the group is.  That goes double when the data is badly skewed, as is the case of the Asperger adults' Raven's test in the second paper.  In that case the "average" was 74 but the standard deviation is 50(!).  For that to happen, the bulk of the data has to be well below the 74th percentile which means the median value would be significantly lower.

Although, to be fair, there are some valid secondary results.  For example, when the paper reports that "the Asperger adults’ Wechsler VIQ was significantly higher than their PIQ (55th vs. 39th percentile), Z =3.43 p<.01", that could be valid because the data is in the same terms and the statistics were (apparently) used properly.  What it means without the main result though is an entirely different question.

Who knows, maybe I am missing something fundamental about the data here or am completely wrong about the percentile thing.  But from that I can see in the paper and what I know about statistics, it looks like the conclusions are based on a faulty analysis.  If anyone sees something obvious that I missed, please point it out in the comments.

I really could go on to point out quite a few other problems with the data such as the fact that the differences are percentiles aren't even based on the same test, or that the number of participants in the papers is rather small, or that confounding social/demographic factors weren't adjusted for.  But since the main result is likely invalid, I don't really see the point in beating a dead horse.

Whew.  Anyone still reading this?

Now that I have rambled about these two papers far longer than I had wanted, let me just say that while I think these two papers are mostly worthless, the idea that people with autism can be intelligent isn't.  There is nothing implicit in autism that says that everybody who has autism is automatically intellectually disabled, although there appears to be a large group that is.

What I think is obvious is that autism disrupts a person's ability to apply their intelligence.  Even if you throw out every problem that I pointed out with these papers and took their data at face value, the data would fully support that idea that there is a break between what a person can do and what autism allows them to do.


1. Dawson M, Soulières I, Gernsbacher MA, Mottron L. The level and nature of autistic intelligence. Psychol Sci. 2007 Aug;18(8):657-62. PubMed PMID: 17680932.

2. Soulières I, Dawson M, Gernsbacher MA, Mottron L. The Level and Nature of Autistic Intelligence II: What about Asperger Syndrome? PLoS One. 2011;6(9):e25372. Epub 2011 Sep 28. PubMed PMID: 21991394.

Saturday, October 8, 2011

Study: Auditory-Motor Mapping Training

As I know all too well from personal experience, getting a non-verbal child with autism to talk can be a real challenge.  Sometimes traditional approaches such as speech therapy and ABA work and other times they don't.  There doesn't seem to be any rhyme or reason as to why a child with autism can't or won't talk or why these traditional approaches work or not.

So some of the time you have to try something strange or different in order to help a child learn to talk.  That is definitely the case in a recently published paper were researchers tested a method called "Auditory-Motor Mapping Training" and found that it did help non-verbal children with autism learn to talk.

If you look at what this group is doing, which is basically singing words and playing the drums, it sounds a bit outlandish.  But you can't argue with success.  And, if you take the time to think really think about it, it does make a certain type of sense.

As we have been teaching the twins to talk, first with sign language, then with PECs, and now with an AAC device, one thing that we have noticed is that they seem to need some extra stimulus in order to learn a word.  It is as if they need a physical gesture (sign, AAC) or some visual sign (PECs, AAC) in order for them internalize a word.  We have also seen them use hand gestures (i.e. signs) or pictures in order to help their recall of a word.

So I am not surprised at all that pairing words with some extra stimulus would be effective. Maybe part of the problem in autism is that the typical auditory/speech pathways in the brain aren't functioning and you have to take the back door approach to get the words into the brain.

The abstract of the paper is below and the full text of the paper is freely available here.

Auditory-motor mapping training as an intervention to facilitate speech output in non-verbal children

Although up to 25% of children with autism are non-verbal, there are very few interventions that can reliably produce significant improvements in speech output. Recently, a novel intervention called Auditory-Motor Mapping Training (AMMT) has been developed, which aims to promote speech production directly by training the association between sounds and articulatory actions using intonation and bimanual motor activities. AMMT capitalizes on the inherent musical strengths of children with autism, and offers activities that they intrinsically enjoy. It also engages and potentially stimulates a network of brain regions that may be dysfunctional in autism. Here, we report an initial efficacy study to provide 'proof of concept' for AMMT. Six non-verbal children with autism participated. Prior to treatment, the children had no intelligible words. They each received 40 individual sessions of AMMT 5 times per week, over an 8-week period. Probe assessments were conducted periodically during baseline, therapy, and follow-up sessions. After therapy, all children showed significant improvements in their ability to articulate words and phrases, with generalization to items that were not practiced during therapy sessions. Because these children had no or minimal vocal output prior to treatment, the acquisition of speech sounds and word approximations through AMMT represents a critical step in expressive language development in children with autism.


Wan CY, Bazen L, Baars R, Libenson A, Zipse L, Zuk J, Norton A, Schlaug G. Auditory-motor mapping training as an intervention to facilitate speech output in non-verbal children with autism: a proof of concept study. PLoS One. 2011;6(9):e25505. Epub 2011 Sep 29. PubMed PMID: 21980480.

Friday, October 7, 2011

Jabberwocky of the Day : How Do I Make My Child Autistic

On the website of the Autism Society of Kent County is a person calling themselves "z" who asks the following question -
I’ve heard that autistic youngsters are incredibly proficient and intelligent. What can I do to make sure my little one will be autistic when it is born?
I am not sure whether this person is serious but utterly clueless about autism or whether they are just being a complete ass.  But I think this picture is the appropriate response to questions like this.

Talk about completely missing the reality of autism.  And to make matters worse, someone actually tried to make the case for the "benefits" of high functioning autism in the comments -
High Functioning Autism does come with some beneficial benefits over the other types of autism. Generally, High Functioning Autism suffer with difficulties with social interaction. This usually does not adversely impact their ability to interact with others on a daily basis at a basic working level. Although they may be labeled as being overly serious or earnest, and to be lacking in the ability to converse in “small talk” conversation. ....
The person goes on for some length but seems to completely miss the point that autism - even "high functioning" autism is a profound disability that you shouldn't wish on your worst enemy let alone your child.  At least the other responses to the question seem to be based in reality, including the "answer" to the question at the top of the page-
"Have confidence in me. You do NOT want your kid to be autistic."
I second that answer, you DO NOT want your children to have autism.  But I think the simple fact that someone could even ask a question like that shows that the "autism gives me gifts" rhetoric can actually do some serious damage.

Thursday, October 6, 2011

Study: Epilepsy in autism

Yet another association with autism that is too often forgotten.  In this longer term study, 33 out of 150 children diagnosed with autism went on to develop epilepsy by the time they were in their twenties.  In the majority of these cases, the seizures began after the children 10 years old.

The study abstract is below.

Epilepsy in autism: features and correlates.

Epilepsy occurs in a significant minority of individuals with autism, but few long-term follow-up studies have been reported, so the prevalence, features (type of seizures, age at onset and severity, etc.) and correlates (IQ history of regression, family history) have only partially been identified.

To undertake a long-term follow-up study of individuals with autism in order to better characterise the features and correlates of epilepsy in individuals with autism.

One hundred and fifty individuals diagnosed with autism in childhood were followed up when they were 21+ years of age. All individuals were screened for a history of possible seizures by parental/informant questionnaire. An epilepsy interview was undertaken and medical notes reviewed for individuals with a history of possible seizures. The features and correlates of epilepsy were examined using survival and regression analysis.

Epilepsy developed in 22% of participants. In the majority, seizures began after 10 years of age. Generalised tonic-clonic seizures predominated (88%). In over a half (19/33), seizures occurred weekly or less frequently and in the majority of individuals (28/31) they were controlled with the prescription of one to two anticonvulsants. Epilepsy was associated with gender (female), intellectual disability and poorer verbal abilities. Although the presence of epilepsy in the probands was not associated with an increased risk of epilepsy in their relatives, it was associated with the presence of the broader autism phenotype in relatives. This indicates that the familial liability to autism was associated with the risk for epilepsy in the proband.

Epilepsy is an important medical complication that develops in individuals with autism. Seizures may first begin in adolescence or adulthood. Putative risk factors for epilepsy in autism were identified and these will require further investigation in future studies.


Bolton PF, Carcani-Rathwell I, Hutton J, Goode S, Howlin P, Rutter M. Epilepsy in autism: features and correlates. Br J Psychiatry. 2011 Apr;198:289-94. PubMed PMID: 21972278.

Sunday, October 2, 2011

The Autism Science Foundation's Makeover Failure

A little over a month ago I pointed out some curiosities about the Autism Science Foundation.  Since that time the foundation has launched a new web site and updated their "2010 Annual Report" web site, so lets see how they did with their update

Complaint #1 : PDD-NOS is Pervasive Developmental Disorder - Not Otherwise Specified

Over two years ago, I pointed out that the ASF's web site was calling PDD-NOS the wrong thing - "Pervasive Developmental Delay - Not Otherwise Specified".  That inaccurate description is still on their new redesigned website.

I can understand the initial version of the site having wrong information but come on.  If one of the goals of the foundation is to "provide information about autism to the general public" and they can't even get the name of the condition correct, how much trust do you think you should place in other things they say?

Complaint #2 : The GFCF Diet

I also pointed out that their information about the GFCF diet was misleading.  They claim that children on the GFCF diet have lower bone densities as if it were a proven fact when, in fact, there is only one small study that showed that children on this diet might have lower bone densities.  And that study was not able to establish cause and effect.  As in the study could not say whether the diet caused the lower density or whether the density problem was caused by the underlying problem that the diet was treating.  Given what I have gone through with my children to get their levels of nutrients up to where they need to be, my money would be on the later.

The ASF also claims that a "large-scale study of the safety and efficacy of the GFCF diet indicated that children on the diet had similar outcomes to those who were not on the diet".  Again, this claim is lacking evidence.  There are some studies of the effectiveness of the diet but most of them would not qualify as "large-scale" and precious few are actually set up in such as way as to test the effectiveness of the diet.

And for that matter, would it really hurt the ASF to include footnotes citing the source of their claims?  Most other places that claim to offer "scientific" based advice do that as a matter of course.

Complaint #3 : The Annual Report

Back in May the ASF announced their first annual report and put up this fancy web site that promised more information in June.  Well, June turned into July and then into August and the ASF still had not make good on that promise.  Finally, during this latest makeover, the ASF got around to updating their anual report web site.

But they didn't provide the information that they promised - they simply took down the references to June 2010.  So if you look under the "Financials" section of the site you will see "Financials Coming Soon!" instead of the something along the lines of Financials Coming in June.

Do you really want to donate to an organization that seems unable to make good on its promises to provide a breakdown of exactly how they use their money?

Complaint #4 : Growing Older Makes It Better

Under their "Treatment Options" section they make some rather questionable claims about the prognosis for children on the spectrum -
Remember, autism is pervasive developmental delay, which means children will continue to develop, learn, gain skills and adapt as they age. Sometimes children lose their diagnosis altogether, leading to claims of recovery. Keep in mind that symptoms of autism change as a child develops.
The unfortunate truth is that not every child on the spectrum will continue to develop and gain skills as they age.  Sometimes getting older will help develop skill but that is far from a given and has not been demonstrated in any sort of scientific study.

This idea touches on what is likely the single hardest thing for parents to accept about autism and what makes autism different from other development disorders.  You have no clue what the outcome for a particular child will be and no way to predict what will actually improve the outcome.  The most frustrating thing is that what works for one child may not work for another - even if that other child is genetically identical.  And there doesn't seem to be any rhyme or reason as to why this is the case.

In other development disorders you have a better idea of what the outcome is going to be from the start and , in some cases, a better set of tools to work with.  With autism the range spans from completely functional with no trace of autism (i.e. recovered) all the way down to completely unable to function in any way.  And no one can tell you if your child is going to be functional or non-functional or what specific treatments or therapies will actually be effective at helping them move along.

The one thing that I can tell you is the worst thing you can do is sit back and assume that they will get better with age.  That is why this idea that children "will continue to develop, learn, gain skills and adapt as they age" is so harmful.  Some children may grow on their own while others will require constant work to move forward.  You can't assume that they will get better simply as a function of aging.

Complaint #5 : Recovery

Apparently the ASF is against the idea of "recovery" from autism -
“Recovery” can be a useful concept, but only if defined as the ability of individuals with ASD to lead fulfilling lives, given the challenges of their condition.
No, recovery is a useful concept because it implies that a person has recovered from autism.  The way that this is phrased presupposes that autism is a life-long condition and is built into a who a person is.  For a foundation that claims to be science based that is a very far-fetched assumption.

Science has no clue what causes autism or what biological effects it has on the body let alone any clue as to whether the effects are permanent and unalterable.  There are certainly hints that it is permanent but there are also hints that it is an ongoing biological process.  Yet the ASF seems to be against looking for a real cure for autism.

Saturday, October 1, 2011

The Level and Nature of Autistic Intelligence II: Where did the study go?

Now this is just strange.  Earlier this week a new study by Isabelle Soulières, Michelle Dawson, Morton Ann Gernsbacher, and Laurent Mottron was published on the nature of intelligence in Asperger Syndrome.

The purpose of the study seemed to be to show that "autistic spectrum intelligence is atypical, but also genuine, general, and underestimated" and that having Asperger's might give you some sort of intellectual advantage.

Or in other words, yet another mostly worthless study from a group of people who have a long and distinguished track record of denying the realty of autism.

Yes, it is nice that these four have stumbled onto an intelligence test that might show that some people with autism aren't as intellectually challenged as other intelligence tests suggest.  And, having been through a formal IQ test with my youngest daughter, I can completely understand that people with autism can score lower than they might otherwise because of how most IQ tests are structured.

But that is really the point - autism is a disability that impairs your ability to function.  It doesn't matter if you are the smartest person in the world if you are unable to apply it in your daily life.

Regardless, that isn't the strange thing here - I would actually be surprised if this group of researchers put out a paper that didn't say something like this.  No, the strange thing is that the study seems to have disappeared from the journal's site.

Here is the link to where the study is supposed to be.  If you go there all you see is a page that says "Article not found".

The press releases for the study are still on EurekAlert and ScienceDaily but if you follow the link the journal's site they study isn't there.  I tried several different ways of finding the study but it does not seem to be on the journal's site anywhere.  But, if you look at Google's cached version of the page you can see that the study was on the journal's site on Sept 29 as of about 3 AM EST.

So the study was published at one point but then it was removed.  I wonder what happened to it.

UPDATE : As pointed out by Jonathan in the comments, the paper was temporarily pulled at the request of Michelle Dawson.  The reason?  Well, it sounds the best in Ms. Dawson's own words -

I've now made a series of tweets about how PLoS-ONE changed the text of our just-out paper, in harmful and unethical ways (calling autistics "patients" is the worst; also imposed person first language), without in any way checking with the authors.  
Links, more info, etc, in my recent tweets!/autismcrisis
Am just stunned. Never could have anticipated this. That's a lot of work effectively wrecked. A lot of the paper is unreadable. Am guessing the abstract with harmful text imposed by PLoS will go up on PubMed too. Unreal. Some person somewhere decides autistics are sick and, what, aren't persons (or whatever the problem is) and wrecks a paper, unilaterally.
 I can see that calling someone a "patient" is a horrific crime against nature and completely unethical.  Yeah, uhm, I wonder if anyone has ever taken the time to explain to Ms. Dawson exactly what the word "unethical" means.