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The Hooker/Thompson conversations: were significant analyses omitted from Hooker’s paper?

27 Aug

As a few people have written about recently, a book was recently published in which we get to read transcripts of conversations between Brian Hooker (a vocal advocate of the idea that vaccines cause autism) and William Thompson (a researcher at the CDC).

The basic story we have been told is that supposedly the CDC team (of which Thompson was a member) saw a “statistically significant” association between MMR vaccination and autism in African American boys. Specifically for boys who got the vaccine late, but before age 3. The story then goes on to claim that he CDC team worked furiously to bury this association. William Thompson, wracked with guilt over this, finally reached out to Brian Hooker to guide him towards this result.

This story is full of holes, as has been discussed here and elsewhere. Rather than go through that again, just take this backstory and ask yourself: given this claim that significant results were omitted by the CDC, wouldn’t Brian Hooker make damned sure that nothing important was left out of the “reanalysis” paper? After all, the main criticism Hooker levied against the CDC team was omission.

You’d think so, wouldn’t you. But you’d also guess that I wouldn’t go through this long introduction if that was the case.

Brian Hooker sold his reanalysis as strong because he took a simple approach. I.e. he didn’t control for any confounding factors. Epidemiologists will tell you the opposite–a raw data analysis is suspect.

In the conversations, we hear that Brian Hooker was well aware that he would get criticism for not making corrections:

Dr. Hooker: Right. Right. Well, what would happen…Okay, so let me play this out … My paper gets published; my MMR paper gets published. They…I get heavily criticized, because I haven’t corrected for scioeconomic factors or maternal education. Yeah. I’ll take my hits, and then eventually it gets published. And then there’s a piece of information that I receive from the CDC, but I don’t source. Is that going to be a red flag?

OK, he knows that a “simple” approach is not considered strong. This begs the question: how important are socioeconomic factors and maternal education he’s worried about? I could tell you that they are huge factors for the conclusion he’s trying to make. But don’t take my word for it, because Hooker and Thompson did discuss the importance of maternal education in the recorded calls. And this discussion is very telling. Consider this exchange:

Dr. Hooker: Right. Right. Well, it does…You know, it does kind of play backwards.

Plays backwards–as in this goes against the story they are trying to tell. Going on:

Dr. Thompson: yeah.

Dr. Hooker:… in terms of: Will those kids that got vaccinated later; then you would expect less healthcare-seeking behavior; so they would be less likely to get an autism diagnosis.

Dr. Thompson: yep.

Yep?!? That’s all he can say? This is KEY to the entire argument that there is an increased risk in African American boys.

Let’s step back a moment and look at this issue. Brian Hooker’s reanalysis is based on very few subjects (seven–African American autistic boys who got their MMR vaccine late). Implicit in his “simple” analysis is the assumption that these boys were in every way similar to the other boys in the study, aside from autism and when they got their MMR vaccine. Let’s say that there’s a reason why these autistic kids were vaccinated late–like their parents didn’t have insurance so they didn’t go to well baby checks. This would correlate with the education of the mother and, thus, this variable could help control for this “health-care seeking behavior”.

This leaves us with a HUGE potentially confounding variable in Hooker’s analysis, and in precisely the population they are most interested in–the kids who got vaccinated later. But he don’t address it in the “reanalysis”. He sweeps it under the rug.

Which is to say, this is a very ironic conversation Hooker and Thompson are having. Hooker appears to be doing exactly what he claimes the CDC was doing: crafting a story around the results he wants to report and omitting important information to make that point.

The conversation goes on.

Dr. Hooker: But if you had maternal education, then you could correct for that.

Dr. Thompson: Right. But …

Dr. Hooker: So, I don’t think I have it.

Dr. Thompson: You could argue the most important confounder was not included in that study. So, why would you even consider the results valid?

Dr. Hooker:Valid.Right. Right, you can’t say either way.

Dr. Thompson: Exactly.

Dr. Hooker: Essentially.

Dr. Thompson: Yep.

Dr. Hooker: You can’t…

Let’s repeat one line for emphasis: You could argue the most important confounder was not included in that study. So, why would you even consider the results valid?

The most important confounder being maternal education. They know this is a big deal.

And this wasn’t just a passing thought in that conversation. Later in that same call, Hooker asked again about how strong an effect one could see from maternal education. In this case, from Thompson’s experience from his 2007 thimerosal paper. And again Thompson tells him that maternal education is a strong factor that should be included in an analysis.

Given this repeated discussion of the need to adjust your results for external variables, you’d expect Hooker to explore maternal education in his own paper, wouldn’t you? As in, do the math and see how much this factor affects his calculated relative risk for MMR in African American boys, right? At the very least, you’d expect a discussion similar to the one above–how this is a potential confounding variable and how exactly it could affect his results (it could go “backwards”).

You’d expect that of an ethical researcher. I would.

Here’s the thing: Brian Hooker did not include maternal education in his re-analysis. the closest he gets in in the final paragraph of his reanalysis paper. This is where he focuses on the weaknesses of his study. He goes into detail about age of diagnosis and how that might affect his results, for example. When it comes to maternal education the closest he says:

In addition, socioeconomic factors were not assessed in the current analysis. Thus, any differences in “healthcare seeking behavior” among individuals vaccinated ontime versus late could not be assessed.

Sorry to be so repetitive, but no word about how important maternal education or other socioeconomic factors are to precisely the conclusion he’s trying to draw. Just a statement that amounts to “controlling for socioeconomic factors can’t be done because I didn’t do it.” The data were available to Hooker in the birth certificates. Hooker even used the birth certificate data elsewhere in his paper (from the paper: “Georgia state birth certificate information was used to further obtain each child’s birthweight”). So he can’t say he didn’t have it.

This is ironic in the extreme: after complaining that the CDC left out a “statistically signficant” result, Brian Hooker doesn’t include a factor which he knows is a major without which one can’t consider the results valid.

I’ll go beyond ironic. This is in my opinion scientifically unethical. And, since his study is really more political than scientific, I consider this politically unethical. Frankly, if someone working for me did something like this as part of his work, he’d be fired.

But, wait, the story is even more strange. Recall how Thompson was bashing the original study (DeStefano, et al.) for being invalid due to not controlling for maternal education (“You could argue the most important confounder was not included in that study. So, why would you even consider the results valid?”). DeStefano et. al did control for maternal education. And not only should William Thompson and Brian Hooker have known this if they were reanalyzing the paper, William Thompson was a coauthor on the DeStefano paper!

One does have to wonder if Hooker did the analysis using maternal education and chose to not report it. Given the discussions he had with Thompson, my opinion is that either Hooker did the analysis or he’s incompetent.

Bottom line, though, if you are going to make some public relations/political hay claiming some group omitted a result, you shouldn’t be omitting important analyses yourself.

Were significant analyses omitted from Hooker’s paper? In my opinion, yes. And from his conversations with William Thompson, we see that Hooker was aware of the importance of factoring in maternal education.

By Matt Carey

Book review: Neurotribes by Steve Silberman

25 Aug Cover-large

A book I have been waiting literally years for comes out tomorrow. I’m speaking of Neurotribes (Amazon link), a book by Steve Silberman. I was lucky enough to obtain an advance copy to review. First let me say that there are a number of good reviews of Neurotribes by Steve Silberman already on the web. I highly recommend this one by Emily Willingham, which includes an interview with the author.

Having referred the reader to an excellent review, I’ll start here with a simple recommendation: buy the book. Or, at least, find a copy somewhere and read it.

If you are autistic, read the book. Silberman gives one of the most sensitive discussions of autism a non autistic can give.

If you are a parent or loved one of an autistic, read the book. If you are at the beginning of the journey, you may want to spend your precious extra time now on books that help you advocate (like special education focused books), but there will be a time when you want this book and will be grateful it’s on your shelf. If you’ve already gone through the advocacy learning curve, it’s a good book to get.

If you are a professional and think you understand how our present understanding of autism came about, you need to get this book. You will be surprised with what you didn’t know.

If you are not in the autism communities, Silberman is a wonderful writer and the book will give you a great read and you will learn a great deal about autism, autistic people and non-autistic people.

Neurotribes is a rather thick book on what seems a specialized subject and I worried at first that it wouldn’t be accessible or interesting to the average reader. But I was immediately struck by how beautifully Silberman’s writes. It is very accessible and entertaining to a general audience.

By now readers are probably wondering when I’m going to stop recommending the book and start reviewing it. Answer: now.

Autism is comprised of many very disparate topics and Neurtribes captures that, with each chapter touching on the various aspects of autism. First and foremost, autism is about people. Autistic people primarily. And Silberman approaches his book with a great sensitivity towards autistics. The book begins and ends with autistics. We start with Henry Cavendish a historical figure who was very likely autistic and ends with an epilogue about Mark Rimland, who has a key place in defining current perceptions of autism is. Mark’s father was autism researcher Bernard Rimland, who is best remembered for his role in defeating the idea that autism was caused by bad parenting. Mark was also one of the role models for the fictional character Raymond Babbit–Rain Man.

Silberman ends the book with a simple statement. And like many simple statements, many of us forget the message:

Midway through the journey of his life, Mark has the most precious and elusive thing that anyone can hope for. He is completely at home on earth.

Autism is a disability. It is a different operating system for the brain. It is a difference. It is so many thing. But all of us, autistic or not, autism parents or not, would do well to follow Mark’s example. Find our place.

Autism is also about non autistics. People who love autistics and people who research autism (and there’s a lot of overlap in those groups). And Silberman pulls all the various groups together in his telling of the story.

Silberman establishes himself as the foremost expert on the history of autism. How did Kanner and Asperger independently come up with the concept of autism (hint–they weren’t completely independent). Why did Asperger focus on the less clearly disabling aspects of autism (hint: he was at work at a time when disabled people in his country were rounded up and killed). We can go on and one, but these little snippets do not do justice to the depth that comes from the fact that Silberman has spent the past four years researching and writing this book.

The depth that Silberman brings to autism’s history (and present!) could easily become bogged down in the details. Neurotribes avoids this without sacrificing the detail. Autism is told through the people, people with personalities and people placed in the context of their time and culture. And that’s what makes this more than an example of thorough research but of skillful writing. We not only hear about Kanner and Asperger (the two credited with first describing autism), but of the people in their labs and the people who followed them. But mostly, of autistics. And not just autistic patients in clinics. We meet one of my personal favorite people, Leo Rosa (an autistic young man) and his mother Shannon. I met Shannon and Steve at about the same time, at IMFAR, an autism science conference, in 2011. We meet many more people and the book is influenced by literally hundreds of people, autistic and non, for whom there just wasn’t room in the book. By telling the stories through people, the book becomes a real read.

I realize that I have yet to discuss neurodiversity. The full title of the book after all is NeuroTribes, The Legacy of Autism and the Future of Neurodiversity. Silberman introduces the topic thus (referring to his 2002 Wired article “The Geek Syndrome”)

One of the most promising developments since the publication of “The Geek Syndrome” has been the emergence of the concept of neurodiversity:the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions. Though the spectrum model of autism and the concept of neurodiversity are widely believed to be products of our postmodern world, they turn out to be very old ideas, proposed by Hans Asperger in his first public lecture on autism in 1938.

and in another place, he states

Neurodiversity advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support. They suggest that, instead of investing millions of dollars a year to uncover the causes of autism in the future, we should be helping autistic people and their families live happier, healthier, more productive, and more secure lives in the present.

One last note: autism’s history has some very low points. It can be very difficult to read about the Nazi eugenics program or the way some non-Nazi’s treated their autistic research subjects. I know that some, especially autistics, will find these sections painful to read.

That said, in case my recommendation was too subtle above: I recommend buying the book :)

Here are more reviews:

The Atlantic has Before Autism Had a Name.

The Guardian has: Neurotribes review – the evolution of our understanding of autism

The New York Times: ‘NeuroTribes,’ by Steve Silberman.

There are more if you search a site such as google news.


By Matt Carey

note: I have personally met the author of Neurotribes.

The Brian Hooker/William Thompson conversations

24 Aug

A year ago we learned that a CDC researcher (William Thompson) had reached out to Brian Hooker (of all people!) and was talking about his (Thompson’s) view of what goes on inside the CDC. Most especially, Thompson appears to have guided Hooker towards a spurious result one can obtain from an old CDC dataset: that if one avoids controlling for any possible confounding variables one can claim that in a small subset of the study population, there is a calcluated risk of autism from the MMR vaccine.

There are so many strange aspects of this story. So many. One that has wracked my brain for the past year is this: why did Thompson reach out to Brian Hooker? Brian Hooker is not an unknown quantity. In the world of people claiming vaccines cause autism, far from it. Brian Hooker is a fixture in the community that promotes the idea that vaccines cause autism. His claim to fame for years was that he was constantly placing freedom of information act (FOIA) requests for documents from the CDC. His family are petitioners to the Court of Federal Claims (i.e. they have a claim in about a family member whose autism they believe was caused by vaccines). Mr. Hooker even spoke with CDC vaccine researchers–including William Thompson–many years back.

In the end, Brian Hooker published a paper (now retracted), teamed up with Andrew Wakefield, totally misused their spurious result in an ugly, race-baiting attack on the CDC, and betrayed Thompson’s trust by outing him.

And pretty much all of that was predictable, if you had any idea who Brian Hooker is.

Given that, there were two possibilities in my mind as to why Thompson reached out:

1) William Thompson was so stressed by what he thought was an unreleased result that he reached out to someone, anyone outside of CDC to get the result out. That he wasn’t aware of who he was working with.

2) William Thompson either didn’t care about the harm that would be cause by his actions, or wanted to cause harm. Let’s face it, Thompson chose the precise person who could make the most damage with the information. It wasn’t a strong result, or even a good result. But it was something that an intellectually dishonest person could sensationalize.

(2) Was very hard to believe. Thompson has spent many years working on public health. He was the lead author on one paper that showed no risk of neurodevelopmental disorders from thimerosal in vaccines. The idea that he would willingly ally with someone whose efforts are very much, let’s say, vaccine antagonistic, is difficult to accept.

As noted above, Brian Hooker betrayed the trust of William Thompson: Hooker not only outed Thompson, but Hooker secretly recorded at least 4 phone calls. And purported transcripts of those calls have been gathered together in a book. The forward is by Robert Kennedy Jr. (who has a long history of claiming he’s “pro vaccine” while acting completely the opposite) and is filled out by a someone named Kevin Barry. It’s a thin book and the material by Kennedy and Barry is basically filler, so you are left with transcripts from 4 phone calls.

From the conversations in the book we see that Thompson is angry. Angry at people. Not as much angry about science or omitted data. You can read more about that at Science Based Medicine.

Was Thompson aware of who he was dealing with in Brian Hooker? Yes. He says, “I see a lot of your stuff online. I saw that you interviewed Congressman Posey, is it?”

There’s a lot of talk of Posey and Congressman Issa. It seems like Hooker’s connections with congress were a big draw for Thompson.

Here’s one exchanges. Not about congress, but we get an idea of Thompson at work.

Dr. Hooker: I’m afraid of those people. I’m afraid of Kevin Malone. I’m afraid of Deborah Tress, I mean, these people, ya know, they don’t like me.

Dr. Thompson: They’re scumbags. But here’s the deal. She is like a twenty-five-year-old and I apologize as I am saying this, she’s like a twenty-five-year-old bimbo that they have do their dirty work. So her sending this email, the fact that they didn’t come from someone with a lawyer. It came from this woman who’s just out of school and just doesn’t know her head from her ass. This is the type of stuff they do. They don’t say who it’s from, they just say OGC.

Here’s a quote attributed to Mr. Thompson:

“But I also have to say these drug companies and their promoters, they’re making such a big deal of these measles outbreaks and they are now, they’re making a big deal that polio is coming back and polio comes back all the time in third world countries. It’s like a never- ending thing where the press loves to hype it and it scares people. It scares the crap out of people when they hype those two types of outbreaks”

Really? A vaccine researcher at CDC thinks it’s “hype” to talk about polio coming back?

Here’s the thing–we want to eradicate polio. That’s what vaccine researchers at CDC are supposed to be helping. Polio is really bad. If it weren’t for people like Brian Hooker, Thompson’s new friend, we might have done that by now. Any outbreak is a big deal. But not to William Thompson.

Boggles the mind.

In discussing the MMR paper–the one where Hooker claims a large risk for MMR in African American boys who are vaccinated late (by not controlling for any confounding variables)–Hooker notes in his conversation:

“I mean, whites are getting diagnosed twice as much as blacks”

That’s a pretty key observation. If you are going to claim a large risk for African American’s, you have to discuss in your paper the fact that this doesn’t mesh with the actual prevalence. The raw prevalence has African American’s not getting counted as much as caucasians.

Does Brian Hooker bring this up in his paper? Address it? No. He ignores a significant result of the analysis. That’s right, he does exactly what he claims is fraud. Well, not exactly–he compounds his error. Let’s look at his (now retracted) paper:

It should be noted that a recent publication has shown that the prevalence of autism in African Americans is nearly 25% higher than that of whites [15].

Yes–even though the data he is analyzing says exactly the opposite, he claims a higher than average prevalence of autism in the African American population.

Let’s belabor that one step further–if he actually believes a higher prevalence in this population, there is a huge issue with the data he’s analyzing. He doesn’t account for this, controlling for any socioeconomic factors, for example. He doesn’t even mention it. It appears that he intentionally omitted significant findings from his paper.

Hooker at one point notes, “I am not an epidemiologist by training”.

Got that right.

You can read more about the conversations at Science Based Medicine as
Vaccine Whistleblower: An antivaccine “exposé” full of sound and fury, signifying nothing

And I’m sure there will be more.

By Matt Carey

Orlando Sentinal: Rep. Posey at center of vaccine-autism fight

22 Aug

As many readers here will be familiar, Congressman Bill Posey has taken up the position of chamion for the “vaccines-cause-autism” groups. He’s been heavily lobbied and somehow convinced that vaccines cause autism.

As I’ve noted in the past, Congressman Posey doesn’t take up autism or disability legislation. As of last year he wasn’t a member of the Congressional Autism Caucus (he appears to have recently joined). He wasn’t one of the 86(!) cosponsors of the Autism CARES Act (passed last year, this continues the Government’s commitment to autism research support).

Until now, his alliance with these groups–groups who cause a large amount of harm within the autism communities–has gone unnoticed by the press. Today an article appeared in his home town newspaper, the Orlando Sentinal. The article is Rep. Posey at center of vaccine-autism fight. You need to register (it’s free) to read the article.

Congressman Posey stresses again his opinion that he is pro-vaccine. While at the same time promoting the failed vaccines-cause-autism idea and, now, suggesting that people spread out the MMR vaccine into separate shots. Besides the fact that the MMR-causes-autism idea is one of the most studied subjects in autism causation (MMR does not increase autism risk), Mr. Posey exposes his ignorance–both of the current state of the U.S. vaccine market and of history. Separate measles, mumps and rubella vaccines are not available in the U.S.. There just wasn’t much market for them. And we all saw what happened when Andrew Wakefield promoted the “Let’s scare people about the MMR and suggest separate vaccines” back in the U.K.. People stopped vaccinating for measles altogether. And now measles in endemic in the U.K. and large outbreaks have been seen in recent years.

Matt Carey, a nationally known advocate on autism issues, questioned Posey’s self-description as “pro-vaccine” and his advice to mothers, because, he said, measles vaccines no longer are available outside the MMR shots.

“So what is a parent going to do? If you put fear into people like that, they will do neither, and they won’t vaccinate,” Carey said. “If you’re pro-vaccine, and you’re not really doing anything about it except carrying water for people who aren’t pro-vaccine, it’s a distinction without a difference.”

He says he’s “pro vaccine”. Let’s look at current legislation:

Is he a sponsor on H.R.2232 – Vaccinate All Children Act of 2015? (no)

H.R.933 – Head Start on Vaccinations Act? (no)

H.Res.117 – Recognizing the importance of vaccinations and immunizations in the United States. This bill has 101 cosponsors! And none of them is Bill Posey.

There are more bills in the works, but you get the picture: He’s pro-vaccine in words. Not in actions.

As to helping the autism communities–he does nothing for the autism communities. In fact, he’s part of the problem. He’s promoting the most damaging idea since Kanner and Bettleheim blamed “cold parents” for causing their children’s autism. In the Orlando Sentinal article Mr. Posey falls back on the same defense that is too often used: he’s just listening to the parents

The alleged link has been widely denounced by much of the U.S. medical community, but Posey said he is influenced by the hundreds of parents he has talked with.

“They say, ‘My son was OK until we took him for an MMR [measles, mumps and rubella shot], and since then he didn’t say another word,'” he said. “And [the parents] are crying. I believe the mother knows more about a child than anyone else. So, anyway, my hearing from so many people made me think: It can’t be coincidental.”

Here’s the thing he should be considering–parents are in pain. They are being served up wholesale for charlatans that sell all manner of abusive “treatments”. Did you manage to walk the halls of AutismOne, Mr. Posey? Did you catch the new thing? Forcing disabled children to undergo bleach enemas? Twice daily? Did they tell you that the same people promoting thimerosal as a cause of autism are also promoting chemically castrating autistic kids? Seriously–by attending AutismOne and not speaking out, you are giving tacit approval to these abusive practices–and more.

Mr. Posey may call himself “pro vaccine”. He may think he’s helping the autism community. His actions tell a very different story.

By Matt Carey

New study on inflammatory bowel disease and autism: Prevalence of Inflammatory Bowel Disease Among Patients with Autism Spectrum Disorders.

12 Aug

People with developmental disabilities often have additional medical issues at rates higher than the general population. For example, heart problems are more common in the Down Syndrome population and Timothy Syndrome. Hip dislocation is common among those in the Fragile X community. Mental health conditions and neurological disorders are very common in autistics (but somehow those are rarely mentioned in discussions of autism and comorbidities).

When it comes to autism parents online, perhaps the most talked about autism comorbidity is gastrointestinal disease. And, in specific, inflammatory bowel disease. This is a lasting legacy of Andrew Wakefield’s attempt to link the MMR vaccine and autism (an effort which set back work on autism and GI disease by a decade or more–see Blame Wakefield For Missed Autism-Gut Connection).

Mr. Wakefield’s assertion was that the MMR vaccine leads to a unique form of IBD (he dubbed it autistic enterocolitis, a condition which doesn’t appear to exist) and this somehow leads to autism. The model also asserts that autism rates have climbed with the introduction of the MMR in the UK (an argument that fails when when considers when the MMR was introduced in the U.S., but I digress). Given the Wakefield model, including the claim that the MMR has played a major role in the “autism epidemic”, we would expect a large fraction of autistics should have IBD.

With apologies to autistics with IBD for taking so long on this introduction–this all begs the question of what is the prevalence of IBD in the autistic population? Well, a recent study discusses this:

Prevalence of Inflammatory Bowel Disease Among Patients with Autism Spectrum Disorders.

Before we get to the prevalence let’s consider the important points. First–IBD does exist in autistics. Given communication issues and sensory issues, any medical condition is serious in the autistic population. Second–IBD is more prevalent in the autistic population. What this may say about the biology of autistics and the developmental trajectory is not discussed in the abstract of this study.

Finally let’s ask how big is the prevalence of IBD in the autistic population? The study looked at two sample populations. In one population 7 out of 2728 (0.26%) autistics had IBD. For another, 16 of 7201 (0.22%). Just because the prevalence is small doesn’t mean this isn’t an important issue for the autism communities. But, let’s face it, the claims of high and rising IBD prevalence in the autism community–the claims by Mr. Wakefield to support his attack on the MMR vaccine–are just not true. And, yes, this also means that people who think that all or most autistic kids should be treated for IBD are also not doing a service. Yes, treat people with IBD. But no, don’t assume autism = person with IBD.

The fact that IBD is not that common in autistics is not really that new. I recall the press conference for the MMR/autism study by Hornig et al.. One thing that slowed the study was the fact that there weren’t that many autistic kids whose symptoms really indicated the need for a colonoscopy. Contrary to some practitioners who seem to believe that all autistics should be ‘scoped.

Here’s the abstract from the study:

The objective of this study was to measure the prevalence of inflammatory bowel disease (IBD) among patients with autism spectrum disorders (ASD), which has not been well described previously.

The rates of IBD among patients with and without ASD were measured in 4 study populations with distinct modes of ascertainment: a health care benefits company, 2 pediatric tertiary care centers, and a national ASD repository. The rates of IBD (established through International Classification of Diseases, Ninth Revision, Clinical Modification [ICD-9-CM] codes) were compared with respective controls and combined using a Stouffer meta-analysis. Clinical charts were also reviewed for IBD among patients with ICD-9-CM codes for both IBD and ASD at one of the pediatric tertiary care centers. This expert-verified rate was compared with the rate in the repository study population (where IBD diagnoses were established by expert review) and in nationally reported rates for pediatric IBD.

In all of case-control study populations, the rates of IBD-related ICD-9-CM codes for patients with ASD were significantly higher than that of their respective controls (Stouffer meta-analysis, P < 0.001). Expert-verified rates of IBD among patients with ASD were 7 of 2728 patients in one study population and 16 of 7201 in a second study population. The age-adjusted prevalence of IBD among patients with ASD was higher than their respective controls and nationally reported rates of pediatric IBD.

Across each population with different kinds of ascertainment, there was a consistent and statistically significant increased prevalance of IBD in patients with ASD than their respective controls and nationally reported rates for pediatric IBD.

By Matt Carey

Kaiser Permanente starts the Autism Family Biobank Study

10 Aug

Kaiser Permanente has a long history of autism research. They’ve performed a number of epidemiology studies, including many on environmental risk factors and also the recent study on The health status of adults on the autism spectrum. They have recently embarked on a large study, the Kaiser Permanente Autism Family Biobank Study.

Sign up online
Study Flyer

You can also find picture books (social stories) for the sample donation process on the Autism Family Biobank website.

From the FAQ for the study, What is the KP Autism Family Biobank?

The KP Autism Family Biobank is a study of Kaiser Permanente Northern California children and young adults with Autism Spectrum Disorder (ASD) and their biological parents. The
study seeks to enroll 5,000 affected children plus their parents (for a total of 15,000 participants) to create a collection of genetic material and information for future research. Dr. Lisa Croen is the principal investigator of the study.

Autism genetics has turned out to be a very complex question. There’s no single “autism gene” but autism clearly has a large genetic component.

What does that mean in practical terms? We need a lot of data to understand the question of autism genetics. And that’s a big piece of what this study will do: bring a lot of data to bear. And not just genetic data. This is a key part of this study and can’t be stressed enough. Kaiser provides healthcare. They have electronic records on their patients. And these patients are the pool from which they will draw their study subjects.

Or to put it simply–they will be able to not only say, “these genes are associated with autism” but “these genes are associated with autism and low verbal skills, while these other genes are associated with autism and regression.” (to give a hypothetical example).

To do this they need a lot of people to participate. They are going to get 5000 autistic kids involved. And they won’t stop there: they will also include parents. That makes 15,000 participants. Not all genes are inherited. With the parents involved, Kaiser can can see if genes associated with autism are inherited or not.

Now many parents will ask (and it’s a valid question), “OK, what will this do for my kid?” It takes time (not a lot, but some) to participate and lots of kids don’t like doctor visits. But consider this: genetics helps people understand biology. With a better understanding of biology, one can make progress towards treatments. There’s a reason why some of the treatments proposed for autism came from research in Fragile-X. People have spent a lot of time studying this genetic condition and that focus has led to proposed treatments.

Or to put the short version of the message out–this isn’t just another genetics study. It’s bigger (15,000 people!) and brings a lot of value with the clinical data that Kaiser has. There’s a chance to have a big impact to better the lives of autistics. If you are a Kaiser member in the study area, please consider participating.

Links and recent news:

Sign up online
First KP Members Join Autism Family Biobank
Kaiser to look for autism’s causes in large-scale study
Study Flyer

By Matt Carey

Disclosure: I serve on a community advisory board for Kaiser. It is a volunteer position (I.e. I get no pay) and will not benefit from this study any more than anyone else in the autism community. And the decision to conduct this study was made before I became involved with Kaiser.

San Jose Autistic Man gone missing–please be on the lookout for Mr. Edward Gaskill

5 Aug

For those readers in the San Francisco Bay Area–an autistic man has gone missing. He’s been missing since July 31st. He needs medication and he needs support. I’ve copied his picture and the flyer (both the original and the text) below.

If you see him or think you have seen him, please call 911 and tell them what you know.

Edward Gaskill Flyer



AUTISTIC, cannot think rationally but communicates fairly well.
DIABETIC, requires daily medication
Missing fom Berryessa area, San Jose, CA, since Friday, July 31, 2015
May be in San Jose, Fremont, or Livermore area
San Jose PD missing person police report #152129505

408-923-0475 home phone (Diane Gaskill, Ed’s sister, legal conservator, and caregiver)
DOB : March 8, 1948
Height: 6 ft 0 in.
Weight: 195 Lb
Hair: Dark Brn with gray
Eyes: Brown
Last seen wearing: Short sleeved plaid shirt, tan pants, tan slip on loafers.
CA ID N3149991
Kaiser medical number 12183023

ILLNESSES • Autism from birth. He cannot think rationally, does not learn from experiences, and cannot
understand the consequences of his actions or not taking his medications,
• High functioning, can talk fairly well, reads and writes at a 2nd grade level.
• Diabetes II, (adult onset), required medication with meals.
• High Cholesterol

Medication Name Dose ( How much is given each time) Frequency (times of day meds are given) Illness controlled by medication.
Metformin 1000 mg (1 tablet) Morning and evening meals Diabetes II
Levothyroxine 150 micrograms Morning Thyroid (1)
Simvastatin 20 mg (1 tablet) Evening meal High colesterol
Risperdal 2 mg (1 tablet) Morning and evening meals and at bedtime Psychiatric med Autism / Anxiety
Multivitamin 1 tablet Morning meal General health

1. Ed had cancer of the thyroid gland and it was removed. This med is mandatory every morning to
maintain several bodily functions.
Note: Ed will often hide if he sees PD personnel because he knows they will stop him and call me. Part
of his mental disability is that he thinks if goes back to places that he lived in the past, everything will be
the same as it was when he was a child.


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