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NIH director on the lack of trust within the autism community

20 Oct

This video is taken from the Simons Foundation blog. The Simons Foundation was able to get NIH Director Francis Collins to make a statement about the resignation of Story Landis from theIACC .

I am impatient for answers. If there were any good evidence that vaccines were causal in autism, I’d be pushing for research on that subject.

As Dr. Collins notes, we should not assume that there is “just one path” that will get us to the truth. I would assert that it is precisely the vaccine/autism organizations who can’t leave behind their one path. We need to move forward, not spin our wheels in the same place that hasn’t proven fruitful for the past 10 years. It’s time to move beyond vaccines.

http://vimeo.com/moogaloop.swf?clip_id=7156587&server=vimeo.com&show_title=1&show_byline=0&show_portrait=0&color=6854a1&fullscreen=1

Wired Magazine: an epidemic of fear

20 Oct

Amy Wallace has written her first piece for Wired Magazine, and it is sure to draw a lot of attention. The article, An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All, covers a lot of ground. The main focus is basically an extended interview with Dr. Paul Offit.

Just in case there are any readers who haven’t heard of Dr. Offit, he is an infectious disease specialist, co-inventor of a rotavirus vaccine, and outspoken critic of the idea that vaccines caused an autism epidemic. Or, as Ms. Wallace writes in her introduction, “To hear his enemies talk, you might think Paul Offit is the most hated man in America.”

Orac, over at Respectful Insolence, has already blogged the article.

The piece points out the very real dangers of vaccine preventable diseases. It also discusses briefly some of the luminaries of the anti-vaccine movement: people like Jenny McCarthy, Robert F. Kennedy Jr and his deeply flawed article in Rolling Stone, Barbara Loe Fisher…unfortunately it is a long list.

Ms. Wallace also discusses autism’s thriving alternative medical community. Search for “Enter the snake oil salesmen” if you want to find that section quickly. Ms. Wallace attended an Autism One conference and reports on her findings.

In discussing how the membership in the CDC’s Advisory Committee on Immunization Practices has changed from mostly medical and vaccine professionals to mostly epidemiologists and public health professionals, Ms. Wallace writes:

That’s not by accident. According to science journalist Michael Specter, author of the new book Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet and Threatens Our Lives, the controversy surrounding vaccine safety has made lack of expertise a requirement when choosing members of prominent advisory panels on the issue. “It’s shocking,” Specter says. “We live in a country where it’s actually a detriment to be an expert about something.” When expertise is diminished to such an extent, irrationality and fear can run amok.

Dr. Offit makes a very good point in the article about risk:

“The choice not to get a vaccine is not a choice to take no risk,” he says. “It’s just a choice to take a different risk, and we need to be better about saying, ‘Here’s what that different risk looks like.’ Dying of Hib meningitis is a horrible, ugly way to die.”

Unfortunately, we now have highly visible doctors like “Doctor Bob” Sears who recommend that people who don’t vaccinate “hide in the herd” so to speak. He tells people in his book that if they don’t vaccinate they should keep quiet about it so that vaccination rates stay high and their family remains protected by the rest of us who do vaccinate.

While morally reprehensible, Dr. Bob’s advice is accurate. From the Wired story:

The frightening implications of this kind of anecdote were illustrated by a 2002 study published in The Journal of Infectious Diseases. Looking at 3,292 cases of measles in the Netherlands, the study found that the risk of contracting the disease was lower if you were completely unvaccinated and living in a highly vaccinated community than if you were completely vaccinated and living in a relatively unvaccinated community. Why? Because vaccines don’t always take. What does that mean? You can’t minimize your individual risk unless your herd, your friends and neighbors, also buy in.

Wired makes special note of the organizations which are particularly vocal in the “anti-vaccine” message:

Anti-Vaccine Websites

Though many of these organizations would not define themselves as such, these are the most active organizations and websites in the current battle against vaccines:

National Vaccine Information Center
Autism One
Generation Rescue
SafeMinds
Treating Autism
National Autism Association
Autism File

As Orac points out, the Age of Autism blog would fit in well with the above list.

I wish I could bet on the criticisms that are headed towards Dr. Offit after this article. I’m fairly confident I can pick out the paragraphs that will be focused upon.

If you read the article, you will understand this: Bonnie, thanks for loaning us your husband. He is a true friend to children.

Blood Mercury Concentrations in CHARGE Study Children with and without Autism

19 Oct

New paper, just out from the U.C. Davis MIND Institute: Blood Mercury Concentrations in CHARGE Study Children with and without Autism.

The Authors are

Irva Hertz-Picciotto, Peter G. Green, Lora Delwiche, Robin Hansen, Cheryl Walker, and Isaac N. Pessah.

Abstract:
Background: Some studies have reported higher blood Hg levels in persons with autism, relative to unaffected controls. Objectives: To compare blood total Hg concentrations in children with autism or autism spectrum disorder (AU/ASD) and typically developing (TD) controls in population-based samples; to determine the role of fish consumption in differences observed.

Methods: The Childhood Autism Risk from Genetics and the Environment (CHARGE) Study enrolled children aged 2-5 years. After diagnostic evaluation, we analyzed three groups: AU/ASD; non-AU/ASD with developmental delay, DD; and population-based TD controls. Mothers were interviewed about household, medical and dietary exposures. Blood Hg was measured by ICP-MS. Multiple linear regression analysis was conducted (n=452) to predict blood Hg from case status controlling for Hg sources.

Results: Fish consumption strongly predicted total Hg concentration. AU/ASD children ate less fish. After adjustment for fish and other Hg sources, blood Hg levels in AU/ASD children were similar to those of TD children (p=0.75); this was also true among non-fish eaters (p=0.73). The direct effect of AU/ASD diagnosis on blood Hg not through the indirect pathway of altered fish consumption was a 12% reduction. DD children had lower blood Hg concentrations in all analyses. Dental amalgams in children with gum-chewing or teeth-grinding habits predicted higher levels.

Conclusions: After accounting for dietary and other differences in Hg exposures, total Hg in blood was neither elevated nor reduced in CHARGE Study preschoolers with AU/ASD as compared with unaffected controls, and resembled those of nationally representative samples.

I don’t have the time to read and summarize the paper yet. But it looks like another nail in the (already nailed down) coffin lid of the mercury hypothesis.

Dr. Landis resigns from IACC: Vaccine-autism lobby shot themselves in the foot

19 Oct

Here’s a big “oops” moment for the good people at the Age of Autism blog and the organizations it represents.

They may have forced the resignation of someone sympathetic to their cause.

Here’s the back story. Dr. Story Landis is one of the government’s representatives on the Interagency Autism Coordinating Committee (IACC). She wrote some notes during a past meeting. After the meeting, someone found the notes and passed them to a blogger at the Age of Autism, who published one of them with a scathing blog post calling for her resignation.

Dr. Landis has resigned.

Note that the blog post was timed to coincide with last week’s IACC meeting. Also note that no one appears to have contacted Dr. Landis prior to posting the blog piece. For that matter, no one appears to have contacted her prior to her resignation.

Here’s what the note read:

I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

Would be a good justification for looking at vaccine injured kids who have gotten awards.

Mr. Kirby has blogged the incident. He includes an email he received from Dr. Landis, quoted below:

I can understand people’s reaction seeing just the note that I wrote during the recent IACC scientific workshop. I felt it important to apologize immediately to the autism community, which I did at yesterday’s IACC, subcommittee meeting. Let me repeat my apology for the record: “I have seen some thoughts that I jotted down during the recent IACC meeting posted on Katie Wright’s blog. I am very sorry that my personal reflections during the meeting have been taken out of context and have been interpreted by the community in ways that I would never intend. As a responsible and committed member of the IACC I am sorry for the upset that it has caused and the concerns that it has raised.”

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

Repeated for emphasis: “The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. ”

If things are as they appear, the Age of Autism bloggers may have just gotten someone sympathetic to their goals to resign from the IACC.

Mr. Kirby’s comment about this explanation set of an irony meter:

A lot of people I have spoken with were also surprised by the statement, given the general hostility toward vaccine research they have encountered at the IACC.

Hostility? When it comes to the IACC there is a lot of hostility, I will grant that. But it flows from certain autism groups and the Age of Autism blog in particular towards the IACC. Mr. Kirby has joined his fellow Age of Autism bloggers in the intense hostility shown towards the IACC and its chair, Dr. Thomas Insel. Watch the recent interview that Mr. Kirby did with Sharyl Attkisson if you would like to confirm this.

I realize that many people are upset that the IACC is not funding vaccine research (even though I am not one of them). But, “hostility”? No. The IACC and Dr. Insel have remained respectful on the subject.

Let’s recap many of the mistakes made in this story

1) Dr. Landis should have been more careful with her private questions and not left the notes behind

2) Whoever did the “dumpster dive” embarrassed the autism community. I’m sure it would have been considered justified if they hadn’t screwed up and forced the resignation of someone sympathetic to their cause. But that leads us to:

3) The Age of Autism decided that a surprise attack was more important that gathering all the facts and published the blog piece without comment from Dr. Landis.

4) Bloggers, including myself, didn’t step forward to defend Dr. Landis’ right to pose reasonable questions.

5) Dr. Landis didn’t defend her own right to pose reasonable questions.

6) Dr. Landis resigned. Yes, I consider that a mistake.

7) Apparently Dr. Insel accepted her resignation. I consider that a mistake as well.

Let’s take a look again at the question Dr. Landis posed that caused such a stir: “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?”

Why is this such an outlandish question? Ms. Redwood represents SafeMinds, an organization which promotes the idea that vaccines caused an epidemic of autism. In their web page on Ms. Redwood’s activities on the IACC, SafeMinds made it extremely clear that autism as vaccine injury was the number one priority for the meeting where Dr. Landis wrote her note. It was perfectly reasonable for Dr. Landis to wonder how the idea of multi-system disorder ties into the idea of autism as vaccine injury. It could have been phrased better. Better yet, it could have been phrased better and posed as a question directly to Lyn Redwood. Unfortunately, the very same hostility that the bloggers Lyn Redwood’s organization sponsors make that nearly impossible. The same politicization of any statement about vaccines and autism that her organziation and Mr. Kirby, their publicist, make it nearly impossible to have that discussion.

Yes, there were people who thought the Age of Autism blog post was a good idea. Many probably still do. The same people are likely writing this post off as gloating at their mistake. This isn’t gloating. This is disgust. This is anger that a bunch of people have ratcheted up the hostility towards the IACC to a level that impedes discussion and progress, and then have the gall to blame the IACC for the hostility.

The fact that you guys shot yourselves in the foot in the process only serves to prove my point.

Sharyl Attkisson interviews David Kirby…and oh is it bad

8 Oct

Have a look for yourself:

http://cnettv.cnet.com/av/video/cbsnews/atlantis2/player-dest.swf
Watch CBS News Videos Online

David Kirby, interviewed by Sharyl Attkisson. Talk about faux-news. For those luckily unfamiliar with Ms. Attkisson, here are some of the pieces done on this blog about her. Ms. Attkisson has a history of interviewing other members of the press and not being critical at all of their unsupported claims. She did this with Bernadine Healy, who made some unfounded claims about the IOM. When a study came out disproving a study by Maddy Hornig on mice and thimerosal that is, Ms. Attkisson blogged the Thoughtful House (Andrew Wakefield) press release on the subject. There’s more, but that gives you a taste of her history.

Today she interviewed David Kirby, author of “Evidence of Harm” and Huffington Post blogger.

To start, David Kirby apparantly has rewritten his book (yes, that is sarcasm). It is titled, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

But according to the interview, his book isn’t primarily about mercury in vaccines. Instead it is all about “increasing environmental exposures, toxins in children throughout the 1990’s and into the early 2000’s from both mercury background mercury environmental mercury which is on the increase and also mercury and other heavy metals and toxic metals that are included in vaccines that we give our children.”

Notice how thimersosal (mercury in vaccines) is downplayed compared to environmental mercury. That’s called revisionist history. Take a look at the back cover from the book (click to enlarge):

Back Cover from David Kirby's Evidence of Harm

Back Cover from David Kirby's Evidence of Harm

A commenter on this blog called the recent National Children’s Health Survey to be the worst sort of prevalence study. It can get much worse. For example–according to David Kirby, when he went through the subway he didn’t see anyone obviously autistic. Yes, David Kirby, epidemiologist and diagnostician has found a dramatically low prevalence amongst the New York subway riders.

David Kirby reminds us all that Asperger’s syndrome is a disability. Mr. Kirby, go back and tell that to Lenny Schafer, the “commenter of the week” on your blog, the Age of Autism.

If someone made a comment on this blog like Mr. Shafer did he would be booed off the stage. Here’s an excerpt:

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

Your blog gave him a free T-shirt. Don’t lecture us about disability.

Dr. Thomas Insel, director of the National Institutes of Mental Health and chair of the Interagency Autism Coordinating Committee declined to be interviewed by Ms. Attkisson.

A sincere “good job” goes out to Dr. Insel. After the way Ms. Attkisson showed a clear bias in doing her story on Dr. Offit, I can completely understand Dr. Insel declining the interview.

The second half of the interview discusses Mr. Kirby’s new book, the use of antibiotics on large farms.

No, seriously, they moved from Autism to animal farms.

Way to plug David Kirby’s new book, Sharyl!

Autism rate of 1 percent, and the embargo that wasn’t

7 Oct

Someone at the CDC screwed up. There, I said it.

That’s the bottom line of the story, in case you don’t want to plow through this rather messy story.

Two stories out today are discussing how the 1% autism prevalence story has been handled by the government, the AAP and the media. An emphasis is being placed on how the information embargo was handled and, possibly, mishandled.

One at the Covering Health blog is titled, Autism news raises question: When is an embargo not an embargo?. The second story, at National Public Radio, is titled When News Breaks On Autism, Who Gets It Out First?

Let’s go through the history of this story to unravel a bit of what happened.

This past summer, two studies were in press discussing the autism prevalence in the United States. The first study, based on data from the National Children’s Health Survey, was to be published in the Journal Pediatrics. (This is the one just published) The second study is a CDC report, in the Morbidity and Mortality Weekly Report (MMWR) series. Previous MMWR’s have given us prevalence numbers of 1 in 166 (based on data taken in 2000) and 1 in 150 (based on data taken in 2002).

Someone at the CDC leaked information about these studies to Lee Grossman. Whether Mr. Grossman approached the CDC employee or the other way around is unknown. There also isn’t any information on whether Mr. Grossman was supposed to keep this information confidential.

What is known is that Mr. Grossman publicly discussed this information at an Autism Society of America meeting in July.

Mr. Grossman also discussed this information with Mr. Kirby. How exactly that exchange came about we don’t know. Mr. Kirby has given a version of the story on his blog, but he has also shown himself willing to lie in order to protect a source.

Mr. Kirby blogged information about the two studies on August 11th. He did not name pediatrics as the journal, but he did note that the study would involve the NCHS data.

The pediatrics study was scheduled to come out this week (Monday, October 5). As is usual, the American Academy of Pediatrics released information to the press the week prior. These releases are made so that the press can prepare well researched stories to be published coincident with the paper. The press are not allowed to disscuss the story until the “embargo” was lifted at 12:01 eastern time, Monday Oct. 5.

The embargo system is actually a quite good one. This insures that the press has the time to put together well researched, thoughtful stories on a given topic. The writer who spends a lot of time on a story isn’t penalized by some guy slapping together a quick story to make a scoop. It’s a win-win: the press get to write better stories, and groups like the AAP get good press coverage.

But what do you do when someone has already leaked part of the story? To make it even more complicated, there were really two stories here: the Pediatrics paper published on Monday and the MMWR that isn’t published yet.

Understanding the high level of interest in the story, the U.S. Government decided to hold a conference call with the press. They planned their own data–the MMWR. In this way, journalists covering the Pediatrics story could include the MMWR without having to rely on the bits and pieces leaked by Mr. Kirby.

This call was scheduled for last Friday (Oct. 2) at 3pm.

The information from this call was embargoed. From the NPR story:

“Both the CDC overview and the HRSA study [in Pediatrics] were embargoed, because the subject nature was obviously so similar,” a spokesman for the National Institute of Mental Health told Covering Health. “It just wouldn’t be appropriate to not have the CDC following the same set of guidelines as the HRSA study as it relates to the embargo.”

This call was at 3pm.

The U.S. Government decided early Friday morning to hold a second conference call for autism advocacy organizations. This call was scheduled for 2pm, and did not include embargoed information. They didn’t discuss the details of the papers, just the new prevalence numbers (about 1%).

The Age of Autism blog posted the announcement and call in number.

According to Andrew Van Dam at Covering Health:

CDC spokeswoman Artealia Gilliard told AHCJ on Tuesday afternoon that everything in the 3 p.m. press call was under embargo, while nothing that would have been covered by that embargo was mentioned in the earlier call with the autism community. In particular, Gilliard said, no specific prevalence rate numbers were given out on the call.

“We basically said ‘On Monday, two studies will come out. They will update the prevalence estimate we previously had.’ … It didn’t actually have any of the information that was embargoed.”

Gilliard, who was on both calls, specified further: “I know they didn’t put out numbers in the advocacy call. I know we didn’t say 1 in 100. What we’ve been saying is ‘approximately 1 percent of children.’”

So, we have two conference calls, discussing much the same information (about 1% prevalence). One was embargoed and the other was not.

David Kirby blogged the story right away on Friday. Mr. Kirby starts his post with:

Washington loves to dump its bad news on a Friday afternoon, and on October 2 it confirmed that 1 percent of American children (and by extension, perhaps 1-in-58 boys) has an autism spectrum disorder.

It is possible that Mr. Kirby didn’t know that the Pediatrics study was to be published on Monday. It is possible that he didn’t know about the second, embargoed conference call.

Possible, but very unlikely.

If he knew (and I believe he did), his introduction is highly irresponsible. It fans the flames of the idea that the government tries to bury autism information. No surprises there, as Mr. Kirby has made a career out of fanning those flames.

Mr. Kirby further fans the flames by indicating that the 2pm call was short:

There was no alarm, and little time for questions from the community that was invited to “visit.” After about 15 minutes, questioning was cut off, and the call abruptly ended. I tried three times to ask a question (via a telephone switching system) and so did many other people on the call, which lasted a total of 39 minutes.

As we now know, the government had to prepare for the 3pm call. Perhaps Mr. Kirby didn’t know about that call. Again, that seems highly unlikely.

Mr. Kirby complains of not being able to pose his question. You can go read it if you want, I am not copying it here. The question, in classic Kirby style, is really a lecture putting out the current talking points of the vaccines-cause-autism groups.

Dan Olmsted at the Age of Autism blog mentioned the conference call as well, but his post was brief and not filled with the leading comments Mr. Kirby chose.

Lisa Jo Rudy at autism.about.com read the Kirby and Olmsted pieces (she mentioned this in her piece) and decided to blog the story herself. Unfortunately, she was a bit confused by what was embargoed and what was not–she discussed the Pediatrics paper (which was embargoed). This was reported to the AAP, who contacted Ms. Rudy and Mr. Rudy pulled the piece. The AAP decided that the embargo breach wasn’t so big as to pull the embargo entirely. In other words, they went ahead and kept the rest of the press to the Monday morning embargo date.

On Sunday, 7 hours before the embargo was lifted, Mr. Kirby ran a copy of his Age of Autism blog piece on the Huffington post.

The Age of Autism blog is still trying to fan the flames, pushing the idea that the mainstream media doesn’t want to cover this story. Mark Blaxill posted a piece today, Autism News: Pathetic Non Coverage, discussing how his home-town newspaper (The Boston Globe) didn’t cover the story when the embargo lifted on Monday. He states that “In the meantime, on Tuesday the Globe posted a link to an abbreviated form of the Associated Press story. A day late and a dollar short.”

I don’t profess to know what methods Mr. Blaxill used when he couldn’t unearth the story on the globe.com webiste. I know that I used “autism” as the search term and quickly found this story, which came out Monday, October 5. There is also the abbreviated AP story that the Globe put out on Tuesday, which Mr. Blaxill references.

What can we say about the whole debacle? It is a big mess. It is a big mess that started when someone at the CDC told Lee Grossman of the Autsim Society of America some confidential information. That person at the CDC screwed up.

Isn’t that just a bit sad? Trusting a prominent representative of a major autism organization has been shown, in this case, to be a mistake.

I won’t say that Mr. Grossman made a mistake by talking to David Kirby. An error in judgment, yes. Mistake, no. Mr. Kirby’s track record of presenting any data in a very biased mode to promote vaccines-causing-autism is quite well established.

I didn’t see any mainstream press coverage that included any of Mr. Kirby’s talking points. He was able to get a prominent spot in the google news searches on autism with his Huffington Post piece.

The main fallout seems to be (a) the CDC will probably clamp down on giving out information and (b) the press has an impression that autism advocates are irresponsible with information.

Are kids with autism more likely to have gastro issues?

2 Oct

Interesting new paper in Pediatrics:

OBJECTIVE: To determine whether children with autism have an increased incidence of gastrointestinal symptoms compared with matched control subjects in a population-based sample.

So do autistic kids have more constipation, diarrhoea, reflux, bloating or feeding issues? The conclusion was:

As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism.

Which is self explanatory but (in my opinion) badly worded. Are the authors saying that _all_ the gastro symptoms they looked at have behavioural aetiology or just constipation and feeding issues? And if the latter, whats their conclusions about the others?

The answer can be found in the results section:

Significant differences between autism case and control subjects were identified in the cumulative incidence of constipation (33.9% vs 17.6%) and feeding issues/food selectivity (24.5% vs 16.1). No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category.

OK so for the other three no real difference was found between autistic kids and non autistic kids. Thats why they weren’t mentioned in the conclusion.

Constipation (as is bloating and diarrhoea) is regularly quoted by the anti-vaccine/autism lobby as being part of a set of gastro symptoms ’caused’ by vaccines, along with their child’s autism. This paper addresses that fallacy directly and clearly shows that three issues are no different than non autistic kids and two may have a behavioural cause.

John Stone/Polly Tommey claim oversight

26 Sep

The first official sounding of the death knell for the ‘hidden horde’ hypothesis of autism (it must be vaccines because there aren’t 1 in 160/150/100 adult autistics) was recently sounded (as reported by Anthony) when an NHS study announced that the rate of autism amongst adults was 1% – exactly the same as for kids.

Fully aware of the implications for their beloved anti-vaccine hypothesis John Stone and Polly Tommey write/star in a recent post on that repository of all things bullshitty – Age of Autism.

NHS Autism Report suggests the increase in autism in recent years was all down to an oversight

Says John Stone, trying to reassure his readership theres still life in the terminal old dog of the hidden horde hypothesis. And why does he say this?

“Are we really able to believe all that we hear on such important subjects, or is there a stronger hand with adifferent agenda behind it?”

Ahhhh, of course! When a piece of science/news story doesn’t support your point of view then it _must_ be the work of….oh, whoever – Illuminati? Out of control government? GAVI? Take your pick.

But surely Stone and Tommey have better reasons than that…? Don’t they?

Well no, not really. They didn’t like the perfectly valid Autism Diagnostic Observation Schedule that was used. Although they don’t refer to it by name, instead they cherry pick questions to try and demean the validity of the test.

The report was based on adults living in households throughout England and the assessments were done in two stages. Stage One asked individuals to rate how well they agreed with 20 statements about their likes, dislikes and abilities – such as whether they preferred going to ‘libraries’ or ‘parties’.

…If the full range of ability had been included in the NHS report, alongside the verbally fluent, high functioning adults living at home, there would surely be far more than 1 in 100. So, either there are more adults than children with an ASD and autism is on the decline(!?) or there is something wrong with the report.

A quick glance at many mainstream autism orgs claim on prevalence would show Stone that yes, there are more autistic adults than children. This report could indeed be interpreted to show a decline in autism.

People will claim that thats counter intuitive but it really isn’t. As autism has become more recognised, better diagnosed and there are more centers worldwide for its early detection, child numbers have not risen but have become more apparent. This is true across the whole ‘spectrum’.

Taking the NAS numbers on prevalence They say that at a rate of 1 in 100 children gives a total of around 133,500 kids with an ASD. This leaves 366,500 adults. A rate of 0.8%.

So the estimate prior to the new report was 0.2% out. But Stone was right, there are now (and always were) more ASD adults than kids. Thats because there are more adults in the general population than kids. In terms of whether the _rate_ of autism has decreased there’s no research to compare this to but an estimate of 0.8% is pretty damn close to 1%. In real terms the NAS were only out by 733 adults. So I would say that this report reflects reality – with no doubt regional variance and other factors, the adult rate is (and always was) around 1%.

But the stoopid continues apace:

One thing is clear, however, the report has no relevance to children withautism like my son Billy and the many thousands like him.

Quoth Polly Toomey who somehow missed the point that this was a study of adults and thus was never going to have much relevance to her children.

We’re then treated to the science of Carol ‘try me shithead‘ Stott who personally received over £100,000 of legal aid money to prop up the dead MMR hypothesis. She claims (after further digs at ADOS) that a ‘further detailed critique’ will be appearing in that robust science journal AutismFile….owned and operated by one Polly Tommey.

So there we have it. This new study, which whilst far from 100% perfect is also far from the dead dog portrayed by the purveyors of science at The Autism File and Age of Autism. They think theres a conspiracy to ‘big it up’ and refuse to see the statistical truth. ASD hasn’t ever been in epidemic, theres been a stable rate for a long time. These dealers in anti-vaccinationism will just have to deal with that.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

24 Sep

Autism, regression, mitochondrial disease and vaccines. With a combination like that, this paper is likely going to be very important.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

Here is the abstract:

Autistic spectrum disorders encompass etiologically heterogeneous persons, with many genetic causes. A subgroup of these individuals has mitochondrial disease. Because a variety of metabolic disorders, including mitochondrial disease show regression with fever, a retrospective chart review was performed and identified 28 patients who met diagnostic criteria for autistic spectrum disorders and mitochondrial disease. Autistic regression occurred in 60.7% (17 of 28), a statistically significant increase over the general autistic spectrum disorder population (P < .0001). Of the 17 individuals with autistic regression, 70.6% (12 of 17) regressed with fever and 29.4% (5 of 17) regressed without identifiable linkage to fever or vaccinations. None showed regression with vaccination unless a febrile response was present. Although the study is small, a subgroup of patients with mitochondrial disease may be at risk of autistic regression with fever. Although recommended vaccinations schedules are appropriate in mitochondrial disease, fever management appears important for decreasing regression risk.

The authors note neurologic regression in general (not just autistic regression) is observed with patients who have metabolic diseases:

Patients with mitochondrial diseases, like many patients with metabolic diseases, are at increased risk of neurologic regression in conjunction with stressors such as fever, infection, and dehydration.

They studied 28 patients who met DSM-IV criteria for autism and diagnostic criteria for mitochondrial disease.

They define regression and whether it is related to fever thusly:

Autistic regression was defined as loss of developmental skills that included speech, receptive skills, eye contact, and social interests in individuals ❤ years of age. A relationship between fever and autistic regression is defined as regression beginning within 2 weeks of a febrile episode without the suggestion of infectious meningitis or encephalitis.

One comment–the definition of regression is somewhat vague to me. What is also critically important in this discussion is whether there were any signs of autism before the regression. Or, as some may put it, is this regression into autism or autistics undergoing regression? Is there a mix of pathways?

They state that 17 of the 28 patients studied underwent an autistic regression. This is higher than the roughly 25% value for autistic regression they assumed for the general autism population, and statistically significant.

In other words, they are saying that autistic regression may occur more often with kids with mitochondrial diseases.

They note that some of the fevers could be linked to vaccination:

The 17 individuals with autistic regression could be divided into 2 groups, those who regressed with fever (70.6%, 12 of 17) and those who regressed without identifiable linkage to fever or vaccinations (29.4%, 5 of 17).

And,

No individual showed regression with vaccination unless a febrile response was present.

They discuss the concerns with vaccination in the conclusion, noting that vaccination is still recommended for children with mitochondrial diseases. My experience in discussing this issue with mitochondrial disease experts is that they find vaccination to be extremely important. If, for some reason, they decide to not vaccinate a child with mitochondrial disease, they insure that all family members are vaccinated to protect the child.

Children with identified mitochondrial diseases are routinely managed carefully by their physicians with aggressive fever control and hydration. In this context, vaccination of children with mitochondrial diseases is recommended. In our experience, the vast majority of patients with mitochondrial diseases receives a full vaccination schedule according to American Academy of Pediatric guidelines without consequences, particularly when physicians are sensitive to fever control and hydration. In our patients with mitochondrial disease and autistic spectrum disorders, the vaccines did not appear related to the neurologic regression.

I will note again that I feel autistic regression as defined is too vague. Were the patients on the spectrum before the regression? Were they typically developing before the regression?

At least two children were noted to have multiple regressions (a sibling pair). That indicates that at least in some cases, regressions occurred in people already autistic. There just isn’t other information on this.

Another area I would like to see discussed further is on siblings:

Affected siblings were identified in 35.7% (10 of 28).

Affected how? Mitochondrial disease. But, are they also autistic? It would seem not since they included one sibling pair.

This is a big question to me. While the spotlight has been shown on the possibility of mitochondrial disorders being linked to autistic regression, the more general question is more important: could fevers induced by vaccination result in any regression (autistic or otherwise) in people with mitochondrial disorders.

Another question in my mind in this study. Are there patients who underwent regression from non-autistic to autistic) after age 3? According to the Johns Hopkins group, this doesn’t happen. According to them, there is an age window where the regressions could result in autism. This is a very important question in how these patients might fit in to the broader spectrum of autism.

Autism and adults

22 Sep

NHS National statistics have released a report entitled Autism Spectrum Disorders in adults living in households throughout England – report from the Adult Psychiatric Morbidity Survey 2007 . The key facts in this document that they list are:

  • Using the recommended threshold of a score of 10 or more on the Autism Diagnostic Observation Schedule, 1.0 per cent of the adult population had ASD. Published childhood population studies show the prevalence rate among children is also approximately 1.0 per cent.
  • The ASD prevalence rate was higher in men (1.8 per cent) than women (0.2 per cent). This fits with the gender profile found in childhood population studies.
  • There is no indication of any increased use of treatment or services for mental or emotional problems among adults with ASD. This is borne out by the recent National Audit Office publication “Supporting People with Autism Through Adulthood”.
  • A greater proportion of single people were assessed with ASD than people of other marital statuses combined. This was particularly evident among men.
  • Prevalence of ASD was associated with educational qualification, particularly among men. The rate for men was lowest among those with a degree level qualification and highest among those with no qualifications.

Understandably, the BBC have focused on an aspect not covered by these key points. The fact that the existence of a similar proportion of autistic adults to the proportion of children who are autistic undermines the idea that MMR vaccine has led to an increase in autism.

Latest autism figures should dispel any fears about the MMR jab being linked to the condition, say experts.

The NHS Information Centre found one in every hundred adults living in England has autism, which is identical to the rate in children.

If the vaccine was to blame, autism rates among children should be higher because the MMR has only been available since the early 1990s, the centre says.

Rather strangely the BBC provides a link on that news story to the JABS website, which continues to scaremonger about MMR and other vaccines. That editorial decision shows just how difficult it is going to be to ever disentangle vaccine conspiracy theories from autism.

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