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.

Don’t Write Me Off

13 Oct

This is the slogan of the latest campaign from the National Autistic Society. It launched today at a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign visit the campaign website

Tags: , ,

Comments of the Month from the Men of the Hour in science

10 Oct

Sometimes I read old magazines and newspapers for articles on disability. It is quite depressing reading about a time when eugenics was discussed openly and an accepted idea.

In such a search recently, I found this article. It is titled, Comments of the Month from the Men of the Hour in science.

Masthead for Comments from Men of Science

Masthead for Comments from Men of Science

This is from the magazine Popular Science, from 1923.

I cut out a depressing comment, from “Man of the Hour”, William Starr Myers of Princeton University. He makes a comment about the feeble minded (one of the old terms for intellectually disabled) and how the “Class A and Class B people do the work of the citizenship of this country.”

Then I saw the “Man of the Hour” listed beneath that sad statement. Prof. Frederick J. Rogers of the physics department Stanford University.

Class A brain Frederick J Rogers

Class A brain Frederick J Rogers

[edit]
If you find that tough to read, here it is typed out:

PROFESSOR WILLIAM STARR MYERS
Department of History and Politics, Princeton University

OF 105,000,000 persons in the United States, statistics show that 45,000,000 are subnormal and never would have the mentality of a child of 13: 15,000,000 are feeble minded and their brain power forever would be that of a child of 8. Of the remaining 45,000,000, at least 25,000,000 are classified as mediocre: 5,000,000 are rated as class A in mentality, and 15,000,000 as class B.

“Class A and Class B do the work of the citizenship of the country.”

followed closely by:

PROFESSOR FREDERICK J. ROGERS
Of the Physics Department, Leland Stanford, Jr., University, whose body accidentally, came in contact with a 3000 Volt electric current–a voltage usually used for electrocution.

ELECTROCUTION is an entirely painless way of inflicting death. It knocked me cold. I never had a pain or a pang–in fact I never knew what happened to me until I was revived 15 minutes later.

“I can’t describe how it seems to be dead. For I have no recollection of sensations until I was revived.

“Death in electrocution is usually caused by stoppage of the heart. Sometimes stoppage of respiration causes asphyxiation.”

I wonder how many people in 1923 found it ironic that a “Class A” person like Prof. Rogers, the type upon whom we all depend, was “Man of the Hour in Science” for having electrocuted himself.

Very often it isn’t the gifts you are given but how you use them that counts.

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.

ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices

2 Oct

The Autistic Self Advocacy Network is gathering support from multiple disability groups to protest recent actions by Autism Speaks.

Blogged at LBnuke and Autistic Self Advocacy Network, SW Ohio

ASAN is calling for more organizations to sign the joint letter:

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization’s latest offensive and damaging Public Service Announcement, “I am Autism“. If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN’s upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

And here is the letter:

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism…I know where you live…I work faster than pediatric AIDS, cancer and diabetes combined. And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain…I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain…I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.”

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)

Not Dead Yet
The Bazelon Center for Mental Health Law

Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2

International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana

—
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

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