Thursday, December 22, 2011

Yet Another Thimerosal Study

In what could be considered an early Christmas gift, researchers in Poland have published yet another study that fails to find an association between thimerosal and autism. Well, I say Christmas gift, but really it is the sort of like the bunny suit that Aunt Clara made for Ralphie in the Christmas Story movie.  After you open the box and look at it you are left wondering what was she thinking.

If you don't know what all the drama is about when it comes to thimerosal in vaccines and autism, well you must have been hiding under a rock for the past decade.  You might want to just go back there and skip this post, it will be better for your sanity.

Anyways, I can't talk about the details of the study because it is in Polish and I can't read Polish.  But two things did jump out at me as I was reading the abstract.

First, vaccines that contain thimerosal are still in routine use in Poland.

That surprised me a little bit since the safety of using thimerosal as a preservative in vaccines was first questioned more than twenty years ago. I thought that most of the first and second world countries had moved away from using it by now.

Second, you can't just a study by its title.

The title of this study is "Lack of association between thimerosal-containing vaccines and autism" and most of the abstract matches the title.  They included children with and without autism, determined how much thimerosal each child was exposed to (not sure how), adjusted for other confounding factors, yada yada yada, and concluded "no significant association was found between TCVs exposure and autism."  Just what you would expect from your run of the mill thimerosal study.

But then there is this one little sentence -
After adjusting to potential confounders, odds ratios of the risk of autism developing for infants vaccinated with TCVs were 1.52 (95% CI: 0.29-11.11) for doses 12.5-87.5 microg, 2.78 (95% CI: 0.29-11.11) for 100-137.5 microg and 1.97 (95% CI: 0.37-18.95) for these exposed > or = 150 microg
I had to read that twice before it sank it.  Here the abstract just finished saying there was no significant association and then it says that infants exposed to thimerosal had an increased risk of autism?  And this risk went up (more or less) as the dose of thimerosal increased?

Say what?

Of course the answer to this conundrum rests in the word "significant", as in statistically significant.  The researchers could not be confident that the relationship was not due to random chance.  And the 95% confidence intervals listed reflect that fact.

For example, if you take look at that first set up numbers, a child was almost one and a half times more likely to develop autism if they were exposed to anywhere between 12.5 to 87.5 micrograms of thimerosal than a child who was not.  But there is a 95% chance than the odds could have been anywhere from one third less likely all the way to more than 11 times more likely.

Or in other words, you can be mostly confident that you have no clue what the real relationship is.

Even still, I would love to be able to read this study and see what the numbers were.  Because it looks like there might be something interesting going on with the data.  Is the data evenly distributed and that is causing the wide intervals or is the data grouped together, possibly highlighting a vulnerable subset?

If only I could read Polish.

Anyway, even if this study did show an increased risk of autism after exposure to thimerosal and that the risk increased as the exposure to thimerosal increased, it would not be anywhere near enough to overturn the other studies that show the opposite.  All it could do is put a little doubt in your mind that something was missed in the earlier studies.


Mrozek-Budzyn D, Majewska R, Kieltyka A, Augustyniak M. [Lack of association between thimerosal-containing vaccines and autism]. Przegl Epidemiol. 2011;65(3):491-5. Polish. PubMed PMID: 22184954.

Tuesday, December 20, 2011

Restricted Diets for ADHD

I think the abstract and conclusion for this new study says it all.  There might be something to the idea that some children with ADHD are sensitive to synthetic food colors and could benefit from a restricted diet.

What's old is new again...

Meta-Analysis of Attention-Deficit/Hyperactivity Disorder or Attention-Deficit/Hyperactivity Disorder Symptoms, Restriction Diet, and Synthetic Food Color Additives

The role of diet and of food colors in attention-deficit/hyperactivity disorder (ADHD) or its symptoms warrants updated quantitative meta-analysis, in light of recent divergent policy in Europe and the United States.

Studies were identified through a literature search using the PubMed, Cochrane Library, and PsycNET databases through February 2011. Twenty-four publications met inclusion criteria for synthetic food colors; 10 additional studies informed analysis of dietary restriction. A random-effects meta-analytic model generated summary effect sizes.

Restriction diets reduced ADHD symptoms at an effect of g = 0.29 (95% CI, 0.07–0.53). For food colors, parent reports yielded an effect size of g = 0.18 (95% CI, 0.08–0.24; p = .0007), which decreased to 0.12 (95% CI, 0.01–0.23; p < .05) after adjustment for possible publication bias. The effect was reliable in studies restricted to food color additives (g = 0.21, 95% CI = 0.06–0.36) but did not survive correction for possible publication bias and was not reliable in studies confined to Food and Drug Administration–approved food colors. Teacher/observer reports yielded a nonsignificant effect of 0.07 (95% CI = −0.03 to 0.18; p = .14). However, high-quality studies confined to color additives yielded a reliable effect (g = 0.22, 95% CI = 0.10–0.41, p = .030) that survived correction. In psychometric tests of attention, the summary effect size was 0.27 (95% CI = 0.07–0.47; p = .007) and survived correction. An estimated 8% of children with ADHD may have symptoms related to synthetic food colors.

A restriction diet benefits some children with ADHD. Effects of food colors were notable were but susceptible to publication bias or were derived from small, nongeneralizable samples. Renewed investigation of diet and ADHD is warranted.

Nigg JT, Lewis K, Edinger T, Falk M. Meta-analysis of attention-deficit/hyperactivity disorder or attention-deficit/hyperactivity disorder symptoms, restriction diet, and synthetic food color additives. J Am Acad Child Adolesc Psychiatry. 2012 Jan;51(1):86-97.e8. PubMed PMID: 22176942 DOI: 10.1016/j.jaac.2011.10.015

Wednesday, December 14, 2011

Vanquish the Forces of Autism Nonsense

When I hear about yet another autism advocate taking a tragic event involving autism and twisting it to serve their own ideological goals, I get annoyed.  There is a time and a place for pushing your views on the world and then there is a time when you should not.

I would have thought it would be obvious, but if a child is dead because their mother killed them, that is not a good time to be pushing your views.  But since this is not the first time that an autism advocate has treated a child's murder as the perfect opportunity to push their agenda, maybe it isn't obvious.

So let me say this again.

You DO NOT use the murder of child to make an ideological point, sit around and basically say "I told you so", nor do you take the opportunity to label a completely unrelated party as "evil".  You just do not do that. Period.

This time (sad that I have to clarify that) I am talking about Shannon Des Roches Rosa's recent rant entitled "Vanquish the Force of Autism Evil! Declare Your Autism Pride" in which she places the blame for an infant's murder on the media and "autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds".

Harold Doherty already took Ms. Des Roches Rosa to task for her rant on Facing Autism in New Brunswick but I thought I might add my two cents worth as well.  You see, while Ms "Declare Your Autism Pride" was busy labeling a large segment of the autism community as "evil" and praising her own attempts to counter negative autism attitudes, she apparently forget to do some basic fact checking.

The incident in question involves a mother by the name of Stephanie Rochester who stands accused of smothering her 6 month-old son because she believed he had autism.  The case has received a good amount of media coverage, such as here, here, and here, so I won't talk about all of the little details of the case.  But the relevant facts of the case are as follows.

This suicidal mother thought that her 6 month old son was showing signs of autism.  She (presumably) knew what the signs of autism were because she "worked as a counselor at the Children's Hospital and had worked with autistic children".  She thought that a child with autism would "emotionally and financially ruin her life" and she didn't want to "burden her husband with a baby inflicted with autism".  So she decided that the rational thing to do would be to murder her own child before she (presumably) killed herself.

Not surprisingly, when this case went to trial, this woman was evaluated to see what her mental state was at the time of the murder.  She was found to be legally insane by both a psychiatrist hired by the defense and a state psychiatrist appointed by the court.  Some of the media articles have suggested that she might have been suffering from postpartum depression at the time of the murder as well.  It is expected that this woman will pled not guilty by reason of insanity and be committed to a mental hospital.

My heart goes out to the family as they lost not one but two family members to this senseless and possibly preventable tragedy.

However, Ms. Des Roches Rosa apparently has a different take on this tragedy.  She "squarely" blames the media and its "autism negativity and fear mongering" as well as "autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission".

Never mind the fact that this woman worked for two years with families who have children with autism, she must have completely ignored her first hand experience and relied instead on what the media said about autism.  It couldn't be that she witnessed first hand what an autism diagnosis can do to a family, she must be a regular reader of those evil blogs that she mentioned.

Never mind the fact that this woman has been found by multiple professionals to be legally insane at the time of the murder, it must have been people trash talking autism that cased this murder.  I mean postpartum depression couldn't have had anything to do with the murder.  It couldn't have been that her fear was based on her actual experience with autism combined with mental health issues that caused the murder.

I don't know what it worse, taking advantage of a child's murder to push your agenda or taking advantage of a person with clear mental health issues to push your agenda.  I find both actions to be completely repugnant.

It is time to stop the nonsense in the autism world.  If Shannon Des Roches Rosa wants to be a postive force in the autim autism world then she needs to stop saying such utter bullshit like  -
It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics.
It is perfectly reasonable, rational, and generally OK for a parent to not like autism and say so publicly.  I love my children very much but I strongly dislike their autism because of what it does to them.  I don't think that autism is a fundamental part of who my children are, rather I think it is something that limits what they can do and puts unneeded obstacles in their way.  They would be better off if they did not have autism.

In Ms. Des Roches Rosa's book, saying so makes me a force of evil that needs to be vanquished.  In my book, it means that I am honest about the reality of my children's disability and my feelings towards it.  I believe that it is important for you to be honest with yourself if you want to have a good life in spite of the challenges that autism brings.

If anyone feels the need to "vanquish" me because of my "evil" views, bring it on.  Although you might want to look up what a "jabberwocky" is and have your Vorpal sword ready as I don't "fall to my knees" easily or give up without a fight.

But seriously, if you want to help new parents that are struggling with autism, the absolute last thing you should do is tell them that their fears of autism are somehow wrong.  You don't look at a person who is handed the enormity of an autism diagnosis and tell them that they are wrong to be afraid.

Instead you acknowledge that the way they feel is a legitimate way to feel when faced with autism.  You  then help them to deal with the fear and emotions that come with an autism diagnosis and help them accept the fact that their child isn't going to be what they expect.  You don't pretend that there is no bad and only talk about the supposed good (still waiting for that to appear).  That goes double or possibly triple if the parents in question have mental health issues of their own.

Murdering your own child is most certainly wrong, but so is blaming it on a group of people you don't like.

How do  advocates such as Shannon Des Roches Rosa expect us to take what they say about autism seriously when they can't show even basic compassion for mentally ill mother?

Practice what you preach or sit down and shut the hell up.

Tuesday, December 13, 2011

ASAN's Discriminatory Agenda

The Autistic Self Advocacy Network (ASAN) recently held a symposium on "Ethical, Legal, and Social Implications" of autism research where they brought together "self-advocates and researchers" to discuss research into autism.

I really couldn't care less about what ASAN has to say about "ethical" implications of autism research (no genetics/autism research) or what they think about "appropriate and inappropriate intervention goals" (no ABA) because most of their positions on those issues are completely nonsensical.

You have only to look at their recent arguments on wandering in autism or Ari Ne'eman basically accusing a presenter at the IACC of supporting eugenics or ASAN's opposition to passing the Combating Autism Act and their continued opposition to renewing it to get a feel for what sort of nonsense they endorse.

But what I did find very interesting was the announcement that they put out afterwards -
The Autistic Self Advocacy Network's Symposium on Ethical, Legal, and Social Implications of Autism Research, funded by the Administration on Developmental Disabilities, was a huge success. The symposium video will be made available in the coming weeks with captioning. We'd like to thank our co-sponsors, the Harvard Law Project on Disability, the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics and the UNESCO Bioethics Chair, American Unit for helping to make this event possible.
Our conversation was broad and wide ranging. Perhaps the most interesting characteristic of the Symposium was the people that came to the table. Our participants - split evenly between self-advocates and researchers - identified a wide number of ways to help advance the inclusion of Autistic people ourselves in the research process. From Community Based Participatory Research processes to greater inclusion of Autistic adults on IRBs and Grant Review panels, a number of actionable next steps emerged from our discussion. ASAN will be following up on this through a series of targeted policy briefs and collaboration with our federal partners to make those ideas reality.
One of the key issues to emerge out of our conversation in Cambridge was the inclusion of Autistic people and other people with disabilities as grant reviewers on federally funded grants. In response to our symposium, several key federal funders have offered to work with ASAN to identify Autistic adults and other people with disabilities interested in serving on forthcoming federal grant review panels.
As a result, we're issuing a call for resumes from Autistic adults and other people with disabilities who believe in the civil rights/social model approach to disability and want to ensure that self-advocates are represented in grantmaking. Please include any areas of expertise within your resume. Resumes can be sent to with the Subject line GRANT REVIEW.
If you had any doubts about what ASAN's agenda was or who they represent, the second to last paragraph should clear it up for you.  ASAN is only interested in your views on autism and having your input for the grant making process if you believe in the social model of disability and consider autism to be some sort of civil rights movement.

Presumably if you, like me, think that autism is far more than just a social or civil rights problem, ASAN does not want you included in the process.

So, what do you call it when a group that claims to represent a large group of people systematically excludes people based on their "beliefs"?  What do you call it when a large part of that same group of people who are being excluded are disabled to the point that they have trouble advocating on their own behalf?

The think the appropriate word is discrimination.

This bit of nonsense was so bad that even Sullivan from Left Brain Right Brain, a strong neurodiversity advocate and staunch supporter of ASAN, said that this sentence should not have been there.

I also have to (almost) laugh at how blatantly obvious this call for volunteers is.  They are basically saying that they going to try to interfere with the scientific process to put a halt to anything that they don't agree with by  getting people with certain views appointed to key positions.

Oops, I'm sorry, maybe that was a little too blunt.  Maybe I should have that they want to put a stop to any unethical research.  You know, the research into the biological and genetic mechanics of autism and behavioral treatments that hold the key to improving the lives of countless children with autism.

Well, that didn't sound any better.

I wonder if anyone has explained to ASAN what censorship is or, for that matter, how the scientific process is supposed to work.  Because science is supposed to be about finding out what the reality of a situation is - not about only allowing the bits that fit your preconceived notions of what something is.  You certainly can't get to the reality of something like autism by ignoring the reality of what autism is for the majority of people who have it.  For these people, autism is far more than just a civil rights movement.

The good news is that ASAN is almost literally throwing away what little credibility they have left each time they pull one of these stunts.  And since their short history is full of these sorts of incidents, they shouldn't have much credibility left.

Maybe someday ASAN will grow up and stop acting like a bunch of rebellious teenagers.  Maybe someday that will actually take the time to understand the needs of everyone with autism instead of just considering what is in their best (self) interests.  Maybe they will take the time to come up with policy suggestions that will actually help rather than hurt children with autism.

And maybe pigs will fly too.

Thursday, December 8, 2011

Glass Half Full of Wishful Thinking

You know, I try to be a glass half full type of person when it comes to being the parent of children with autism.  I have found it is best to look on the bright side and stay hopeful about the future while not dwelling on the unpleasantries that go along with autism.  But I have also found it is equally important to acknowledge the realities of autism and to resist the urge to sugarcoat the situation.  It is a fine but necessary line to walk if you want to keep your sanity in the face of autism.

But there is looking on the bright side while acknowledging reality and then there is this new paper that talks about the "benefits to the lived experiences of female primary caregivers of children with autism."  In this paper, the authors interviewed 8 mothers who were  primary caregivers for children with autism and concluded that "benefits were found in all areas of questioning, including financial, social, familial, health, and employment implications, in addition to benefits arising from activities and involvements taken on as a result of raising a child with autism"

I haven't read the full paper but the conclusion alone is so absurd as to be laughable.

Having a child with autism has financial benefits?  Oh come on.  Providing even the basic therapies for autism - behavioral, speech, and OT/PT - can be hugely expensive, especially if the costs are not picked up by insurance.  That doesn't even begin to consider all of the other associated therapies that might be required or the lost wages from having one parent staying at home.  And I won't even touch the prospect of having to provide life-long support for a child who might be unable to ever case for themselves.

I could go on as to why the other "benefits" are equally bad but I don't really see the point in depressing everybody.  The bottom line is that having a child with autism can and often does imposes a heavy cost to the parents in all of the areas listed.

I can't imagine that the authors were able to support that conclusions without resorting to cherry picking through the question answers or engaging in some wishful thinking.  And even if, by some miracle, they managed to find 8 mothers who did say that having a child with autism gave them all of these benefits, I doubt that their experiences would be representative of mothers' experiences in general.

I have to wonder what the point of the current paper was since it flies in the face of most of the other available data.  The last sentence in the conclusion seems to suggest the purpose is to help improve the lives of  families effected by autism - "In this way, clinical nurse specialists may encourage and contribute to support systems that foster a positive experience for caregivers of children with autism spectrum disorder, the children they care for, and their families"

But I can say, from my own experiences, the absolute last thing a family needs is a medical professional trying to blowing sunshine up your butt.  It is hard enough to come to terms with what autism means and what impact it is going to have on your life without someone purposely distorting the picture.  And until you manage to come to terms with and accept what autism means for your family,  you are never going to be able to deal with it over the long term.

Don't get me wrong, raising a child - even a child with a disability such as  autism - can be a very rewarding experience for a parent.  But let's not pretend that autism doesn't come with a high price tag.


Markoulakis R, Fletcher P, Bryden P. Seeing the glass half full: benefits to the lived experiences of female primary caregivers of children with autism. Clin Nurse Spec. 2012 Jan;26(1):48-56. PubMed PMID: 22146274

Wednesday, December 7, 2011

First Drug Targeting Core Symptoms of Autism Nears?

Curemark is reporting that its phase III trail of its dietary enzyme for treating autism showed statistically significant improvements in both the core and non-core symptoms of autism.  Of course this information is just from a press release and we shouldn't draw any conclusions before the results are published, but it does look promising.

For those of you who aren't familiar with this enzyme, its purpose is to help break down dietary proteins that people with autism might not be able to digest properly on their own.  If this study has in fact managed to demonstrate improvements to the core symptoms of autism by altering the digestive process, that would be huge.  The question would then no longer be whether there is a connection between GI symptoms and autism but rather what the connection is.

I look forward to the full results being published.

The press release from Curemark is below.

Curemark LLC Reports Positive Phase III Results of CM-AT In Children With Autism
Wednesday, December 7th - 2011

RYE, New York, Dec. 7, 2011 – Curemark LLC, a Rye, New York-based drug research and development company, today announced that its Phase III double blind randomized placebo controlled multicenter clinical trial of CM-AT for autism met its primary and secondary endpoints.  The trial compared CM-AT to placebo in children with autism aged 3 – 8.  Top line results demonstrate a statistically significant effect of CM-AT over placebo on both core and non-core symptoms of autism.  Analysis of the full trial data is ongoing and the results will be presented at an upcoming medical meeting.

“We are extremely pleased with the results of our trial,” said Dr. Joan Fallon, CEO of Curemark. “We wish to thank all the children and their parents who participated in the study, and look forward to a full review of the data by the FDA.”

CM-AT has been granted Fast Track status by the Food and Drug Administration (FDA). The fast track programs of the Food and Drug Administration are designed to facilitate the development and expedite the review of new drugs that are intended to treat serious or life-threatening conditions and that demonstrate the potential to address unmet medical needs.

(Read the rest, including relevant disclaimers, on the Curemark site).

Friday, November 4, 2011

Autism Prevalence in Gothenburg Sweden

I haven't seen the full text of this one yet but it looks interesting.  The 0.80% is relatively close to what was found in the US 5 years ago but I have to wonder why it is so far below the more recent 2.64% estimate out of South Korea.

The Prevalence of Autism Spectrum Disorders in Toddlers: A Population Study of 2-Year-Old Swedish Children
Autism Spectrum Disorder (ASD) is more common than previously believed. ASD is increasingly diagnosed at very young ages. We report estimated ASD prevalence rates from a population study of 2-year-old children conducted in 2010 in Gothenburg, Sweden. Screening for ASD had been introduced at all child health centers at child age 21/2 years. All children with suspected ASD were referred for evaluation to one center, serving the whole city of Gothenburg. The prevalence for all 2-year-olds referred in 2010 and diagnosed with ASD was 0.80%. Corresponding rates for 2-year-olds referred to the center in 2000 and 2005 (when no population screening occurred) were 0.18 and 0.04%. Results suggest that early screening contributes to a large increase in diagnosed ASD cases.


Nygren G, Cederlund M, Sandberg E, Gillstedt F, Arvidsson T, Carina Gillberg I, Westman Andersson G, Gillberg C. The Prevalence of Autism Spectrum Disorders in Toddlers: A Population Study of 2-Year-Old Swedish Children. J Autism Dev Disord. 2011 Nov 3. [Epub ahead of print] PubMed PMID: 22048962.

Tuesday, November 1, 2011

Autistics Speaking Day : Listen to the Silence

Today, November 1st, is "Autistics Speaking Day" and is supposed to be a day where people with autism tell the world what it is like to live with autism.  Today is supposed to be a day to raise awareness and acceptance of autism, to battle negative stereotypes about autism, and to advocate for the inclusion of "autistic" people in the community.  All of these things are laudable goals.

But today, in my ever so humble opinion, should not be remembered only for the voices that you do hear, but also for the voices that you don't.  Today, the voices you won't hear is the overwhelming majority of people with autism because autism has taken their ability to communicate.

There are no solid figures available, but by all accounts almost half of all people with autism never learn to talk.  Another ten to thirty percent will have rudimentary use of language but would not be able to carry on a typical conversation.  It is only a minority of people with autism who have the ability to communicate effectively with the world.  It is only the minority who are able to function in the world in spite of their autism.

So today, you will hear about the experiences and needs of a very vocal minority of people with autism.  And while these people do have worthwhile and important things to say, let's not forget that they tend not to speak for the needs of the silent majority.  In their rush to declare that autism is just a "difference" or a neurological diversity that needs acceptance rather than a cure, this group of vocal "autistics" tends to marginalize and ignore the needs of those who are profoundly disabled by their autism.

So today, while you are listening to the voices of the "autistics", don't forget to listen to the silence from the majority of people with autism who are unable to talk for themselves.

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.

Friday, September 30, 2011

Combating Autism Act Renewed

The bill reauthorizing the Combating Autism Act for another three years was signed into law today by President Obama.  This bill will provide 693 million dollars over the next three years for funding research, surveillance, and education activities related to autism.

If you are interested, there is more information about the history of the re-authorization under both the initial Senate bill S.1094 and the final House bill H.R.2005 that was passed into law.  There is also a breakdown of the costs provided by the Congressional Budget Office.

The text of what the Combating Autism Act is available here.  If you aren't familiar with what the Combating Autism Act is and isn't, you might want to take the five minutes to read what it is meant to accomplish

On a slightly infantile note, I would like thank the Autistic Self Advocacy Network (ASAN) for their hard work in opposing this important legislation. Their misunderstanding and misrepresentation of this bill came to nothing and the bill was passed in spite of their objections.

So to ASAN I would just like to say.

Nana-nana boo-boo

P.S. Yes, I understand that services and supports for adults with autism are an ever increasing and urgent need.  But did ASAN really have to campaign against badly needed research into the nature of autism and educational services for children?  Whose needs do you think that ASAN is advocating for because it sure isn't the needs of the majority of people with autism.

Wednesday, September 28, 2011

Jabberwocky of the Day : John Elder Robison on the Male Female Autism Imbalance

As was first pointed out on Autism's Gadfly, John Elder Robison is once again talking about things that he doesn't seem to have the faintest clue about.  Last time, Mr. Robison was making completely inaccurate statements about CDD.  This time, Mr. Robison is talking about the the fact that autism is far more common in males than females and coming up with some rather far fetched ideas to explain the discrepancy.

As most of you probably know, autism is about four times more common in boys than girls.  This gender skewing was first noted all the way back in the 1940s when Kanner "invented" autism and has remained a constant property of autism even as as the number of children with autism has exploded from 1 in 10,000 in the 1940s to 1 in 100 today.

What you may not know is that a similar gender skewing is commonly seen in other childhood disorders as well, such as ADHD and intellectual disability.  The exact ratio of boys to girls changes with the disorder but in general boys are more likely to have a developmental disorder than girls.  So, in reality, there doesn't seem to be anything that different about autism in this regard.

The question is then why are boys more likely than girls to have development disabilities.  In my opinion, the general answer to that question is built into the question itself.  Obviously, there is some different between males and females that either makes males more susceptible or females less susceptible to these conditions.  Either the reason is genetic, biological, social, or (most likely) some combination of the three.

The trick has always been to identify the causes of the conditions and then to work backwards to determine why males are more affected than females.  But since, when it comes to autism (and ADHD), we don't have any real clue as to what the the cause of the condition is, we don't have any real clue as to why the difference is there.

But that doesn't stop Mr. Robison from coming up with some rather, uhm, interesting ideas about why this difference exists.  He first seems to suggest that families with children on the spectrum are more prone to having boys than girls -
If we assemble a collection of families in which there is at least one autistic child, that distribution of sons and daughters is not 50/50.  It favors the males.
But I have never run across any study that has even suggested that families who have children on the spectrum are more likely to have boys than girls.  This claim would go against the generally held (and proven) idea that the chance of having a boy or a girl is roughly 50/50.

It would be a fairly simple matter to survey a large number of families who have with multiple children where at least one child has autism and see if this were true.  But I would like to think that, if this claim were true, someone would have noticed the discrepancy and published on the subject by now.

In fact, the largest autism sibling study to date that was published just this year and included data on 664 sibling showed (roughly) the expected 50/50 breakdown between the genders.

Who knows, maybe Mr. Robison's proposed relationship has been demonstrated in other studies and I just missed it.  But if so, I think he needs to show us the data and not just make unsupported statements.

Next, Mr. Robison goes on to show an astounding ignorance of basic chance when he suggests that -
One explanation is that some parents have a son with autism and stop having children.  So the girls that might even the male/female ratio are never born.  I think that explanation may be true today, but what about the ages before modern birth control?
Frankly, I don't even understand how this could work.  It seems like Mr. Robison is suggesting that first born children are more likely to be a boy than a girl but that idea is just plain nonsense.  The chance of having either a boy or a girl in any given pregnancy is almost 50/50.  That fact is as true for the first child as it is for the last child.

Maybe he is suggesting that a first born boy is more likely to have autism than a first born girl but then the chances even out after the first child?  But that would not make any sense either.  If boys and girls both had the same chance of having autism then you would have the exact same chance of having a first born boy with autism as you would a first born girl.

Then Mr. Robison makes some rather strange claims about the "historical record" (i.e. pre 1940) of people with autism -
Critics might say that we don’t know how autism was distributed among the sexes a hundred years ago, and that’s true.  The autism diagnosis has only existed for sixty-some years.  Yet we do have strong anecdotal evidence.  Using that, some modern day people have “diagnosed” historical figures with autism based on what we know of them and their lives.  How many of those individuals are female?  Almost none.
Those “post-mortem diagnoses” are certainly subject to challenge and I’m sure some are even wrong.  That said, they can’t all be wrong and the male-female ratio in the known historical record of autism remains strikingly tilted toward the male side.
There are so many things wrong with this argument that it is hard to know where to begin.

Perhaps the worst part is the idea that a post-mortem diagnosis is evidence of anything besides someone having way too much time on their hands.  You simply cannot diagnosis someone based on little snippets of what is published about their life.

It is hard enough to diagnosis an adult with high-functioning autism who is sitting in front of you with their parents and has a complete record of their development.  When you add in a span of hundred years or so, several changes in culture, a selective report of only parts of their life, and the inability to talk directly to the person, then making an accurate diagnosis becomes next to impossible.

Then the idea that "they can't all be wrong" is just silly.  Yes, every post-mortem diagnosis can be wrong and, given the challenges in making an accurate historical diagnosis, I would be willing to bet that almost all (if not all) of them are in fact wrong.

And calling a post-mortem diagnosis "strong anecdotal evidence" does a disservice to the word "strong" as well as the word "evidence".  The idea that speculation based on extremely limited historical information is actually "anecdotal evidence" let alone "strong" is just absurd.

But, for the sake of argument, lets assume that these absurd statements are true and that the historical record does have more males than females with autism.  Does that tell us that there were more males than females in the past or does it tell us that, historically, men were much more likely to be written about than women?

Anyone with even a cursory knowledge of historical literature should know the answer to that question.

Perhaps the only intelligent thing that Mr. Robison has to say on this subject is that idea that female fetuses with autism are less likely to survive -
Geri Dawson suggested another possible explanation for the male-female imbalance.  What if girl embryos are actually more susceptible to some factor implicated in autism, but in a different way?  The factor that produces autistic baby boys might result in unsuccessful pregnancies when the fetus is female.  The result – fewer baby girls with autism are born
If this idea repeated by Mr. Robison is correct then you would expect to see a noticeably higher rate of autism in children with prenatal complications.  Having a history of miscarriages means that you have a greater chance of having complications in future pregnancies.  But the most recent study of the topic suggested that there is no such broad association.

Furthermore, in some of the known genetic causes of autism the exact opposite happens - the male child is either more effected or has a lesser chance of surviving.  A male child with Rett Syndrome is very unlikely to survive while a female can because of her double X chromosome.  And in Fragile X, a female is somewhat protected against having the symptoms of the disorder, again because of genetic differences.

So, if anything, I think this idea might be correct if it was flipped.  Rather than female fetuses not surviving, it seems more likely that being female offers some sort of protection against developing autism as well as other development disabilities.

But again, maybe there is data out there that shows a higher rate of miscarriages in mothers who children have autism.  But to me it sounds like grasping at straws.  Perhaps it would be better to have some actual concrete data to support a claim rather than just idle speculation.

I think the most disturbing part of all of this isn't the nonsense itself but rather Mr. Robison's position at Autism Speaks.  It doesn't really matter than he has some really strange ideas about autism or that he seems to misunderstand some basic science.  We all have areas where we are less than knowledgeable but still like to pretend we know what we are talking about.

No, I think the most disturbing part is that Mr. Robison serves on the scientific advisory board of Autism Speaks and helps select what science they will fund.  If a non-expert like myself can see the gaping holes in his ideas then what does that say about the projects he would suggest funding?

Friday, September 23, 2011


I know that this isn't autism related, but scientists with the OPERA experiment are saying that they might have observed a small particle called a neutrino traveling faster than the speed of light.  If this result is true then it will overturn much of what we think we know about how the universe operates.

As astounding as that result would be if it were found to be true what I think is more astounding is how the scientific community is responding.  Here you have something that would overturn decades of dogma and challenge everything that we think we know and yet the reactions are cautious and balanced.

I haven't seen anyone spouting off about how we "know" this result can't be true or how this question has been asked and answered already.  No one seems to be launching personal attacks against the scientists involved.  And no one seems to be overselling the result or claiming that this result "proves" that all we think we know about physics is wrong.

In short, the parties involved seem to be acting in a rational, scientific manner.  They found a result that they didn't expect and are seriously examining it to see if it is true - even though it goes against everything that they think they know about physics.

Only time well tell if the speed of light isn't the absolute limit that we though it was but scientists acting like scientists is a nice refreshing change.

Now if only the world of autism could do the same.

Thursday, September 22, 2011

Study: Immune System Disruption Implicated in Autism

There have been a couple of good studies published in recent weeks that look at the possible connection between disruptions of the immune system and autism.  But one in particular that was published just last week in PLoS One looks to be the best of the bunch.

I have not read it in depth yet so I might be getting some of the details wrong.  But in general, it looks like these researchers managed to take the many rare genetic mutations that have been seen in autism and demonstrate that many of these mutations converge on biological paths that control immune system signaling.  The researchers suggest that these disruptions have the potential to alter typical brain development and lead to the symptoms of autism.

I would normally include the abstract of the study but I think these paragraphs from the conclusion puts the findings into prospective -
Interestingly, there is also mounting evidence at the cellular and tissue levels that more in depth investigation of an immune component is warranted in ASD. For instance, multiple studies have demonstrated altered cytokine profiles in ASD patients, and altered TGF-B concentration in serum and CSF correlates with disease severity. Others have described various autoimmune phenomena including autoantibodies to neural antigens and maternal-fetal cross-reactive neural antibodies. There is also indication of altered innate cellular immunity in ASD, such as differences in gene expression and altered response to immunostimlulatory ligands in both natural killer and monocytic cells from ASD patients. Post-mortem brain tissue from ASD patients shows increased microglial density in grey matter, an activated morphology, and secretion of a cytokine profile consistent with a pro-inflammatory state, most prominent in the cerebellum. Moreover, microglia from MeCP2- null mice—a model of the Autism Spectrum Disorder Rett Syndrome—produce a conditioned media that damages synaptic connectivity via a glutamate-excitotoxicity mechanism. While all of this work provides post-hoc evidence for altered immune response in ASD, our results suggest a direct link between implicated genes in ASD and molecular pathways involved in immune signaling.
This considerable attention to the immune response in previous ASD research has resulted in two prevailing theories: one suggests exogenous factor(s) stimulate neuro-inflammation during development, while the other postulates autoimmune activation causes ASD pathology. However, it is equally possible—as our results support—that the mutations described in ASD result in aberrant signaling regulation of immune cells during neurodevelopment. This could result in cell-autonomous activation and/or improper response to otherwise nominal stimuli, such as occurs in the autoinflammatory syndromes. Alternatively, as glia are increasingly implicated in normal formation of synaptic connectivity —and we have demonstrated a significant proportion of ASD-implicated genes appear to be glial-specific—it is possible that genomic aberrations ultimately funnel through core signaling pathways of glial cells to disrupt formation of neural networks independent of an inflammatory mechanism. In support of this notion, a number of recent reports have demonstrated that these same cytokine signaling pathways are central to proper brain development. Furthermore, signaling through the NFkB pathway has been shown to be important in synaptic plasticity independent of an inflammatory mechanism.
The study is open access so go read it if you are interested in the subject.


Ziats MN, Rennert OM. Expression Profiling of Autism Candidate Genes during Human Brain Development Implicates Central Immune Signaling Pathways. PLoS One. 2011;6(9):e24691. Epub 2011 Sep 15.
PubMed PMID: 21935439. DOI: 10.1371/journal.pone.0024691