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).