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Evaluation of Immunization Rates and Safety Among Children with Inborn Errors of Metabolism

2 Nov

Ever since the Hannah Poling case became public, and especially give the way in which David Kirby has presented the case, there has been a question of whether vaccines can cause regressions in children with inborn errors of metabolism (mitochondrial disorders are a subset of these).

I discussed one very recent paper Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression. Commenter and LBRB blogger Joseph made the very correct observation then:

I’d say it’s potentially interesting, but limited. In order to tell that something is a risk factor, you need a case-control study.

More specifically, can self-selection bias be discounted in this study?

It is encouraging to see that such studies into this question are being staged. Here is the abstract from a study presented 2009 Infectious Diseases Society of America titled, Evaluation of Immunization Rates and Safety Among Children with Inborn Errors of Metabolism.

Abstract

Background: Children with metabolic disorders are a potential high-risk group for vaccine-preventable diseases. Despite recommendations that they receive all routine immunizations, information regarding both immunization rates and safety data within this population is lacking.
Methods: Using Northern California Kaiser Permanente’s (NCKP) integrated electronic medical record, we identified children up to age 18 years who had an inborn error of metabolism (IEM) from 1990 to 2007. We assessed immunization rates among a subset of infants with IEM born at NCKP who were members until age 3 years matched to healthy infants (1:20), comparing both immunizations received by age 2 years and timing for receipt of vaccines. We next separately assessed for adverse events after immunization by using self-controlled analyses among all children up to age 18 years with an IEM who received at least 1 vaccine at any time, comparing emergency room visits and hospitalizations during post-vaccine days 0-30 to post-vaccine days 31-60.
Results: We identified 79 infants with IEM who were born and remained a member of NCKP at age 3 years. Compared to 1580 matched controls, there was no difference in the proportion of children with IEM up to date for vaccines at 2 years, nor was there any delayed receipt of recommended vaccines during the first year. We also preliminarily identified 322 children with IEM who received any vaccine. Preliminary analysis in this group did not detect an increase in emergency room visits [rate ratio (RR) 0.83, 95% confidence interval (CI) 0.60, 1.14] or hospitalizations (RR 1.1, 95% CI 0.9, 1.4) during the 30 days after vaccination compared to post-vaccine days 31-60.
Conclusion: Children with metabolic diseases in this cohort were vaccinated at rates comparable to healthy children. Although sample size is a limitation, preliminary evidence does not suggest an association between vaccination and an increased risk for serious adverse events.

Emphasis added.

A news story on the subject quoted the session chair where the study was presented:

“These findings are very reassuring,” said Larry Pickering, MD, National Immunization Program, Centers for Disease Control and Prevention, and Emory University, Atlanta, Georgia, who moderated the session at which the study was presented.

“Most of us who take care of kids with inborn errors of metabolism think vaccination is one of the best interventions we can offer them,” he said. “They are at increased risk for devastating complications, even death, from the diseases that the vaccines prevent.”

This is reassuring. Preliminary, yes. I can already see the criticisms, both legitimate and otherwise, that will be levied against this study. but potentially very reassuring. Vaccines are one of the front line interventions in protecting people with mitochondrial disorders.

Let’s see if I can predict the criticisms:

1) not peer reviewed
2) many authors received grant money from vaccine manufacturers.
3) the sample size is small (79 infants)
4) the number of infants with mitochondrial disorders is even smaller (7)
5) it would be good to see a comparison of hospitalizations in the months previous to immunizations (if possible)
6) the time spanned by the study covers a large change in the immunization schedule. The sample size of infants immunized in the current schedule is likely to be rather small.

The sample size is small, but it would be interesting to see if the prevalence of metabolic disorders has increased over this time span. But, as autism has shown us, the correlation=causation arguments can be shaky at best.

David Kirby: No friend to my autistic kid

27 Oct

David Kirby is certainly no friend to my autistic child.

I don’t know why I let David Kirby annoy me. It is a pretty safe bet that whenever he blogs he will write something that rubs me the wrong way. Whether it is his clear lack of science acumen or his faux fence sitting “I’m just trying to spark a national debate” ruse, he never fails to write something offensive.

Recently he responded to the very strong possibility that the number of autistic adults is much higher than previously thought with what amounts to essentially, “Autistic adults? Nope, I’ve never seen ’em. They must not exist”.

The right answer in my view would be, “We need to confirm this right now and find out who may be getting no support or the wrong support.” That’s what a friend to my kid would say. By denying the existence of autistic adults Mr. Kirby has shown himself to be about as far from a friend as I could imagine.

In his recent interview with Sharyl Attkisson Mr. Kirby noted that he didn’t see any autistics on the subway or in his neighborhood, therefore there can’t be 1 in 100 autistic adults. Therefore, according to his logic, there is an autism epidemic. Of course he says this is to support the idea that we need to take the vaccine issue seriously.

It was nonsense when he first said it and I pointed it out. I thought that having embarrassed himself on national TV, Mr. Kirby would quietly drop the idea that somehow “I know ’em when I see ’em” is either valid or respectful. I’ve watched Mr. Kirby for too long to even hope that he would apologize or do a real retraction without real pressure but I will say I was surprised to see him write a blog post basically defending his autistic-radar.

In a recent blog post Mr. Kirby has expanded his scope of not-finding autistics. It isn’t just his recent subway ride that was devoid of adult autistics, it is his entire life:

I have lived in many different cities, worked at nine different jobs, and met thousands of men and women throughout my years. I cannot recall people who showed the characteristics of high-functioning autism, though I must have met some along the way, at least in passing. But there were not 1-in-60 boys with ASD in my schools and there are not 1-in-60 men with ASD in my area. I think I would have noticed them by now.

Repeated for emphasis:

I cannot recall people who showed the characteristics of high-functioning autism

In an entire lifetime, no one who might be high-functioning autistic?

David Kirby has been around the autism community for a while now. Somehow I think he must have seen some adult with high functioning autism. Are we to believe that no autistic adults attend the DAN conferences, the Autism One conferences, or the myriad other alternative medicine conferences that hold David Kirby as a hero? Are we to believe that no autistic adult parents of autistic children attend these conferences?

One specific question that popped into my mind: Has Mr. Kirby never been to a conference with Teresa Binstock? Ms. Binstock is one of the authors of Autism: a novel form of mercury poisoning (a faux-journal paper in Medical Hypotheses). Ms. Binstock is also reported to be an autistic adult (Asperger syndrome). Mr. Kirby has never met her? Possible, but unlikely.

According to his interview Mr. Kirby’s criteria for Asperger syndrome are:

“restrictive, repetitive and stereotypical patterns”

“interests and behaviors that are abnormal”

“Repetive motor mannerisms such as hand or finger flapping”

“Significant impairment in social, occupational and other important fuctions”

I guess as Mr. Kirby was passing people on the subway platform he had some test of social functions? He can tell what your interests are (and somehow label them abnormal) just by looking at you?

For Mr. Kirby’s edification, here are the DSM-IV criteria:

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”

Here’s another hint: if diagnosing ASD’s was as simple as a checklist there wouldn’t be tests like the ADOS.

Mr. Kirby continues the old ruse that autistics are so obvious that one couldn’t possibly miss them, even in passing. Contrary to Mr. Kirby’s assertion, it is possible that he could have missed some autsitics in his subway travels. When the autism rate for children in Cambridgeshire was recently reported, the researchers noted that a large fraction (1/5 to 1/3) of autistic students were undiagnosed. Yes, even educational professionals who spend every day with a kid can miss the fact that the child has an ASD.

In his blog post Mr. Kirby bolsters his argument with a quote from Anne Dachel, probably best known to readers here as an blogger at the Age of Autism. Ms. Dachel states:

“an insult to thousands of teachers and counselors and doctors – who apparently ‘stupidly’ ignored these kids in the past. If they were always here, but we just called them something else, then what did we do with them?”

I am always saddened when an educator like Ms. Dachel confuses intelligence with knowledge. Intelligence (smart/stupid) is not the same thing as knowledge (or ignorance). When previous generations didn’t diagnose a child with an ASD there were many reasons. One big reason–the diagnostic criteria were different then. That is and example of ignorance. I feel silly pointing this out to an educator, but in 1980 they didn’t know (in fact couldn’t know) that the diagnostic criteria would be different in 2000. How many times have we heard, “autism wasn’t covered in medical school back then”? This is used to “show” that autism was rare then. Well, if they didn’t get the training, they were very likely ignorant of the differences between autism and other disabilities. They were certainly unlikely to know the diagnositic criteria for Asperger syndrome, since it didn’t exist at the time.

To answer Ms. Dachel’s question, “what did we do with them”: many autistics services were served under the label of mental retardation. This isn’t even speculation. In a recent study King and Bearman showed that a large number of autistics in California were diagnosed as having mental retardation before 1987. As the criteria changed and awareness grew, these individuals (both children and adults) were also given autism diagnoses. They checked the actual records of actual people and documented it.

To further answer Ms. Dachel’s question, “what did we do with them”: many of “them” were unserved–just like today. Remember that study in Cambridgeshire we just mentioned?

Back to David Kirby’s blog post: he shows us that he is truly “concerned”:

In my opinion, to shrug and treat this story as if things have probably always been this way is, frankly, wishful thinking and unsettling.

It is Mr. Kirby’s response that is unsettling. Heck, it is beyond unsettling. Way beyond.

I think his response the NHS report (that there are 1 in 100 autistic adults) by claiming that since he can’t see “them”, “they” don’t exist is beyond wishful thinking and unsettling. Mr. Kirby acts as though the study doesn’t exist. Worse, he acts as though it shouldn’t exist.

I usually try to avoid speculating on motivations. But, I can’t help myself with these latest comments by Mr. Kirby. Why did he feel the need to downplay the existence of adult autistics in high numbers? The report that there is a high number of unidentified autistic adults is a direct threat the the idea that vaccines caused an epidemic of autism. How does that play to someone who has made a career out of “Evidence of Harm. Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

Consider, if you will, what happened when people like Mr. Kirby pushed the idea of an epidemic of vaccine-induced autism. When the ideas came forward that the MMR vaccine or the vaccine preservative thimerosal could be causing autism, the scientific community took it seriously and responded with multiple studies looking for better evidence. But now that there is evidence of a large contingent of adult autistics, Mr. Kirby joins the denialists and defends the old-guard thinking. Ironic, that.

It has always been a reasonable assumption that there is a large contingent of unidentified autistic adults. The active denial of this possibility has long bothered me. The denial in response to the UK survey of autistic adults is just beyond the pale.

Mr. Kirby is just no friend to my kid. My kid needs advocates who will fight to make a better world for autistics. How can we do that if we deny their existence? How can we prepare for the kids of today to become adults if we don’t start supporting autistic adults now?

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.

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.

Facilitated Communication – where does a neurodiverse skeptic stand?

6 Oct

An article in yesterdays Longmont Times raised (for me anyway) the issue of Facilitated Communication.

This is an issue that is, in its own way, just as divisive as the vaccine issue amongst sections of the autism community and science. You see, some autistic and autism advocates believe passionately in the efficacy of FC whilst science largely rejects FC:

Current position statements of certain professional and/or advocacy organizations do not support the use of Facilitated Communication due to their objections that it lacks scientific validity or reliability. These organizations include the American Speech-Language-Hearing Association, Association for Behavior Analysis International (ABAI), American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation. ABAI calls FC a “discredited technique” and warns that “its use is unwarranted and unethical.”

The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an “inappropriate intervention” for individuals with autism spectrum disorders

The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three. * [correction: Michelle is not an FC supporter] *

So what do I do? Should I be making a call for more studies (sounds familiar!) or dismissing the voices of autistic people I trust on the issue or dismissing established science?

Or is there another option? What are your thoughts on FC? A decent debate would be useful for lots of people I think.

Do we need an epidemic for people to take autism seriously?

6 Oct

There is a lot of press coverage around the recent Pediatrics study and the government’s stand that the prevalence of autism spectrum disorders (ASD’s) is about 1%. As I read the articles and, especially, some of the blogs, I am left with the question: why do some people feel that we need an epidemic in order for autism to be taken seriously?

Dr. Geraldine Dawson, chief science officer for Autism Speaks responded to the announcement with:

“There is converging evidence that autism spectrum disorders affect about one percent of the population. This study further emphasized that autism affects boys at a significantly higher rate. It is imperative that more resources be given to autism research so we can understand the causes and biology of autism and develop more effective treatments.”

Autism Speaks is a group that depends on donations, and they aren’t making unfounded calls of an epidemic.

An ASD rate of 1% or more has been shown in studies for at least 10 years. The just released study used the National Child Health Survey 2007 data. This raised a bit of a stir when the study results were leaked recently, and I spent a lot of time looking at the raw data. I also pointed out that Joseph at the Natural Variation-Autism blog discussed a number of studies pointing to a 1% or higher prevalence in his post Moving Toward a New Consensus Prevalence of 1% or Higher.

These studies weren’t hidden or obscure, either. Even Dr. Andrew Wakefield, the man most responsible for the notion that the MMR vaccine causes autism, cited the Swedish study in his early patent application.

The studies are known to researchers in the field. In a Time magazine story out Monday, Prof. Richard Roy Grinker is quoted:

What’s significant is that the study lines up well with other, more rigorous studies finding a 1% rate of autism. “It provides what scientists call convergent validity: no matter how you shake the bushes, you come up with this 1%,” says Richard Roy Grinker, an autism researcher at George Washington University who has worked to determine ASD prevalence in South Korea.

As noted, Prof. Grinker’s team has studied the ASD prevalence in South Korea. At the Autism Speaks “Decade for Autism” kickoff at the U.N., one of Prof. Grinker’s collaborators, Dr. Young Shin Kim, noted that the prevalence in Korea is likely in line with other countries–1 in 100 to 1 in 200.

If you think the recent jump from 1 in 150 to 1 in 91 was a shocker for the United States, wait until the Korean prevalence jumps from 1 in 10,000 to, say, 1 in 150. Will they claim epidemic, or will they realize that the previous prevalence method seriously under counted the autistic population?

Prof. Craig Newschaeffer of Drexil University is quoted as in Time Magazine saying:

“Nonetheless, the survey reinforces what we have come to understand over the past decade — that autism is much more common than previously thought.”

It is safe to say that Geraldine Dawson, Richard Roy Grinker and Craig Newschaeffer take autism very seriously. And yet they (and the vast majority of the autism research community) do not believe in or feel the need to promote autism as an “epidemic”.

The major autism research organizations aren’t claiming an epidemic. Autism Speaks, Simons Foundation, and the Nancy Lurie Marks (NLM) Family Foundation aren’t calling this an epidemic. Even the Autism Society of America didn’t call the news an “epidemic” in their press release. My guess is that no one will be shocked that the Autistic Self Advocacy Network didn’t call the latest prevalence figures a sign of an epidemic.

Look outside the autism communities. Do we need to hear “epidemic” in order to take disabilities seriously? No.

One can take autism very seriously and still not consider it an epidemic. I realize that many readers of this blog won’t consider this news at all.

I know many people can’t see how jump in the number of ASD diagnoses (or, in the case of this study, parent-reported autism diagnoses) doesn’t mean an epidemic. But many of us have been pointing out how the previous ASD prevalence values were under counts.

Frankly, I find it very disturbing that we likely haven’t been identifying all the autistic kids and adults for all these years.

I find it more disturbing that many of the so-called autism advocacy organizations have been so willing to ignore the possibility that the prevalence estimates were an under count–all in the name of promoting vaccine causation.

The most cited autism prevalence number up until now was 1 in 150. This came from a CDC report called an MMWR, published in 2007, Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002.

The study looked at 8 year olds in 2002–children born in 1994. The prevalence was 1 in 150. Another way to put that is 67 per 10,000.

These same children were 13 in 2007, when the NCHS survey data was taken. This is the data used for the 1 in 91 prevalence estimate released this week.

Take a look at Table 1 from the recent Pediatrics study. The prevalence for 12-14 year olds is 118 per 10,000.

So, one study, using one methodology, using data from 2002 and published in 2007 gets 66 per 10,000.

Another study, using different methodology, using data from 2007 and published in 2009 get 118 per 10,000.

This for the same group of kids.

Is there an epidemic? Is there an epidemic that nearly doubles the autism prevalence kids between the time they are 8 and the time they are 13?

Autism advocacy doesn’t need an epidemic to be taken seriously. In fact, pushing an epidemic will make sure we aren’t taken seriously.

Autism rate 1 in 100 in American Children?

5 Oct

A new study in the Journal Pediatrics claims a prevalence of Autism Spectrum Disorders of 110 per 10,000 (1.1%). This is notably higher than previous estimates based on the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.

There is little doubt in my mind that this will get a lot of media attention.

The paper is:

Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007

by

Michael D. Kogan, PhD,Stephen J. Blumberg, PhD, Laura A. Schieve, PhD, Coleen A. Boyle, PhD, James M. Perrin, MD, Reem M. Ghandour, DrPH, Gopal K. Singh, PhD, Bonnie B. Strickland, PhD, Edwin Trevathan, MD, MPH, and Peter C. van Dyck, MD, MPH

Here is the abstract:

OBJECTIVES: The reported increasing prevalence of autism spectrum disorder (ASD) and attendant health and family impact make monitoring of ASD prevalence a public health priority.

METHODS: The prevalence of parent-reported diagnosis of ASD among US children aged 3 to 17 years was estimated from the 2007 National Survey of Children’s Health (sample size: 78 037). A child was considered to have ASD if a parent/guardian reported that a doctor or other health care provider had ever said that the child had ASD and that the child currently had the condition. The point-prevalence for ASD was calculated for those children meeting both criteria. We examined sociodemographic factors associated with current ASD and with a past (but not current) ASD diagnosis. The health care experiences for children in both ASD groups were explored.

RESULTS: The weighted current ASD point-prevalence was 110 per 10,000. We estimate that 673,000 US children have ASD. Odds of having ASD were 4 times as large for boys than girls. Non-Hispanic (NH) black and multiracial children had lower odds of ASD than NH white children. Nearly 40% of those ever diagnosed with ASD did not currently have the condition; NH black children were more likely than NH white children to not have current ASD. Children in both ASD groups were less likely than children without ASD to receive care within a medical home.

CONCLUSIONS: The observed point-prevalence is higher than previous US estimates. More inclusive survey questions, increased population awareness, and improved screening and identification by providers may partly explain this finding.

The authors used the National Survey of Children’s Health. We have discussed the NSCH data previously on this blog.

The data are based on a phone survey, and use parent reports, not direct observations. For example, the researchers didn’t actually test any children, but they instead relied upon the phone survey answers to questions like:

For each condition, please tell me if a doctor or other health care provider ever told you that [your child] had the condition, even if he/she does not have thecondition now….Autism, Asperger disorder, pervasive developmental disorder, or other ASD?

The 1412 who answered yes to that question were asked:

Does [your child] currently have autism or ASD?

With 913 answering yes.

78,037 families were polled. This was a response rate of about 51% (assuming that all calls that were unanswered were residences and not busisnesses).

I have discussed raw data from the 2007 NCHS. By contrast, the researchers corrected the raw data for various factors that could cause systematic errors.

Estimates were weighted by using survey sampling weights available from the National Center for Health Statistics. These weights reflect the inverse of the probability of being selected for the survey and were adjusted to account for nonresponse and noncoverage of households without landline telephones. Weighted estimates are representative of the US noninstitutionalized population of children aged 3 to 17 years.

After correcting for these factors, the authors came up with a prevalence value of 110 per 10,000 children. (1.1%)

Parents were asked about the severity of their child’s ASD. Most answered mild. The breakdown is

Mild: 54 per 10,000
Moderate:37 per 10,000
Severe: 18 per 10,000

The age distribution wasn’t flat, but neither did it show the huge variation one would expect from special ed data, CDDS data or other sources often cited.

3-5 years old: 85
6-8 years old: 132
9-11 years old: 138
12-14 years old: 118
15-17 years old: 77

There is a higher prevalence amongst males than females, as expected. The prevalence amongst Hispanics (103/10,000) and non-Hispanic African Americans (61/10,000) are both lower than amongst whites (125/10,000).

Many of the results are shown in Table 1 from the study, shown below.

Table 1 of prevalence report using NSCH data

Table 1 of prevalence report using NSCH data

Aside from the overall prevalence number, the second hot topic from the survey is the large number of children whose parent answered yes to “have you ever been told that your child has an ASD” but who answered no to “does you child now have an ASD”.

People are referring to these children as having “lost” their diagnoses. They account for about 0.4% of the total survey.

The authors spend a significant amount of time discussing the possible reasons why some children may have “lost” a diagnosis. We have already discussed some of the reasons on this blog.

The bottom line is, there isn’t enough information in the survey to tell. We do know that most of the children who “lost” an autism diagnosis had some other disability.

It needs to be stressed–there is no confirmation that these children ever had an official diagnosis of autism. That isn’t just for the group that “lost” autism, but for the entire group.

This is a significant limitation of this study. I have stated before, I think this sort of survey is good for generating questions for future studies. For that purpose, these surveys are valuable. They are faster and cheaper than a full study. But it is far from the sort of data that should be used to claim a definitive prevalence.

I expect to see a lot of press coverage of the new “prevalence”. While this study is a good, and it is consistent with many studies that show a prevalence in the 1-1.5% range, the data just aren’t strong enough to make such definitive statements.

Edited to add:

The USA Today story on this study has a quote that I think sums it up quite well:

Pediatrician Susan Levy, founder and director of the Regional Autism Center at Children’s Hospital of Philadelphia, notes that Kogan’s study is based only on what parents said about their children, not information from doctors involved in their care.

“For what it is, it’s very well done, and I don’t mean that critically,” she said in an interview. “It is one method of getting a handle of how many people in the country have this disorder. Is it the best method? No, but it is one way of approaching it.”

Do techie parents have more autistic kids?

2 Oct

This is the stuff of legend. So says the Simons Foundation blog in discussing a new epidemiological study out of California. A previous study reported that fathers of ASD kids are more likely to be engineers. The idea got into the mainstream media (and deep into the public psyche) when Wired Magazine even called the phenomenon the “Geek Syndrome“.

Well, someone checked. Someone being Gayle Windham, Karen Fessel and Judith Grether. If you are an autism epidemiology geek, you will recognize at least some of those names.

Here’s the abstract:

Autism spectrum disorders in relation to parental occupation in technical fields
Gayle C. Windham, Karen Fessel, Judith K. Grether

A previous study reported that fathers of children with autism spectrum disorders (ASD) were more likely to work as engineers, requiring systemizing skills, and suggesting a distinct phenotype, but alternatively this may have been related to selection biases. We conducted a population-based study to explore whether fathers, or mothers, of children with ASD are over-represented in fields requiring highly technical skills. Subjects included 284 children with ASD and 659 gender-matched controls, born in 1994 in the San Francisco Bay Area. Parental occupation and industry were abstracted verbatim from birth certificates. Engineering, computer programming, and science were examined as highly technical occupations. To limit bias by parental socio-economic status, we selected a referent group of occupations that seemed professionally similar but of a less technical nature. Odds ratios (ORs) and 95% confidence intervals (CI) were calculated by logistic regression, adjusting for parental age, education, and child race. Mothers of cases were somewhat more likely to work in hi-tech occupations (6.7%) than mothers of controls (4.0%, P=0.07), but little difference was observed among fathers, nor for engineering separately. Compared to parents in other white collar occupations, the adjusted OR for highly technical occupations among mothers was 2.5 (95% CI: 1.2-5.3) and among fathers was 1.3 (95% CI: 0.79-2.1), with no evidence of a joint effect observed. Our results regarding maternal occupation in technical fields being associated with ASD in offspring suggest further study to distinguish parental occupation as a phenotypic marker of genetic loading vs. other social or exposure factors

To summarize it even more: mothers in “highly technical” jobs had a 2.5 times higher chance of having an autistic kid. There isn’t a clear statement for fathers. Also, there isn’t evidence of a “joint effect”. I take that to mean that the “geeks marrying geeks have more autistic kids” idea didn’t pan out.

They can’t say why mothers in highly technical jobs have more autistic kids. This makes it a study that can be quoted by everyone. “It’s genetic, see mothers in technical jobs have more autistic kids”. “It’s social, mothers in technical jobs are more likely to know about autism and get their kids diagnosed”. “It’s environmental, mothers in technical jobs are exposed to more toxins”.

In the end, this is no joke. We need to understand all the factors that can affect epidemiological studies. Epidemiological data for autism are pretty muddy, in my opinion. A lot of things have happened in the last 20 years (or more) that have changed the “rate” of autism diagnoses. Anyone who wants to find one of the many causes of autism (which is, as we all know a plural: autisms), needs to understand these factors.

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.

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