Professor Peter Bearman on vaccines and autism revisited

21 Apr

I’ve posted a few pieces on the work of Prof. Peter Bearman recently. I mentioned his work on vaccines and autism in one post but the lecture was not one that could be embedded and the part on vaccines is only a relatively short bit towards the end of the lecture.

So I took that section of the lecture out and put it on YouTube so I could embed it. This is discussing data from what I assume is an upcoming paper by Prof. Bearman’s group.

Prof. Bearman notes that vaccine refusal rates in California are higher in areas where autism organizations have a presence. However, vaccine refusal rates are *not* higher in areas with high autism prevalence.

In other words: autism isn’t scaring people away from vaccination. But, autism organizations are.

can be as much as 7 times higher if there are autism organizations in a given area. The baseline refusal rate in California is about 1.6% (in 2003). In other words, there are pockets of vaccine refusal of 10% or more in California, correlated with autism organization presence.

There are those who gloat about increasing fear of vaccines. It is too bad that time, money and effort didn’t go into something valuable to the autism communities. Let’s hope it doesn’t backfire on us in the form of infectious disease outbreaks blamed on the autism community.

Prof. Peter Bearman interviewd by Tom Insel

21 Apr

Prof. Peter Bearman is a sociologist at Columbia University who has undertaken a monumental task: figure out what is behind the increase in autism prevalence. He has chosen (at least so far) to work with California Department of Developmental Services data. This dataset is no where near the “gold standard of autism epidemiological data” that some have touted it to be. But it remains as one of, if not the best, dataset in the US.

I wrote about his most recent paper in Social influences on the rise in autism prevalence and Diagnostic change and the increased prevalence of autism.

Given the importance of this work, I thought it worthwhile to present this short interview of Prof. Bearman by the NIMH Director and IACC chair, Dr. Tom Insel. It is significantly shorter than the full lecture I linked to, and it is possible to embed it:

Prof. Bearman’s team is working on analyzing the California Department of Developmental Services (CDDS) dataset to see what trends can be identified.

Ascertainment, change in diagnostic criteria, increases in parental age, socio-demographic changes are factors in the increase in prevalence.

For example, in the past, it was wealthy families who were more likely to obtain an autism diagnosis for their child. Now that socio-economic divide is disappearing. This is a sign that ascertainment has been an effect.

Professor Bearman notes that some effects have been quantified:

25% of the increase is diagnostic change on the border between autism and mental retardation
16% of the increase is diagnostic change on the other border–between autism and other disorders
3% spacial clustering
11% increased parental age

Prof. Bearman suggests that the increased parental age factor is likely genetic in origin. Increased parental age leads to more copy number variations (CNV), leading to more autism.

I don’t expect this to change the “there can’t be a genetic epidemic” slogan. At this point it isn’t proven that this large factor is genetic. But it is possible.

There is still a large fraction of the increase which is unaccounted for. Prof. Bearman warns at the end that a search for a “quick and dirty” answer may not be advancing science.

I take “quick and dirty answer” to mean vaccines.

The problem is highly complex. The next steps in this study will be very difficult. The social influences on increasing autism prevalence can amplify other factors. Finding possible causes for a real increase in autism incidence will be complicated by other factors. But unless someone quantifies and understands those factors, the likelihood is very low of ever finding causes of autism which might drive part of the increase in prevalence.

60 Minutes exposes stem cell con men

21 Apr

Autism News Beat has a post, Avoiding false balance, 60 Minutes nails con men. It isn’t autism specific, but it does have to do with a type of “therapy” that comes up a lot in autism: stem cells.

60 Minutes, a U.S. television news magazine did a “sting” operation. They had patients go into the stem cell clinics and expose the charlatans. The patients were real, they have ALS (Amyotrophic lateral sclerosis)

The clinic run by a man named Larry Stowe claims to be able to cure cancer, ALS, MS, Parkinson’s disease and more…

He is a chemical engineering Ph.D. who claims he has cures for chronic diseases with herbs and vitamins, custom vaccines, and stem cell injections.

(below are the videos. Thanks to codeman38 for providing this link to the text)

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

Here is part 2

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

Major fail by medical regulators: Dr. Rashid Buttar given slap on the wrist

21 Apr

Beware, North Carolina. Beware. Dr. Rashid Buttar is free to practice medicine.

So goes the title of a blog post by Orac at Respectful Insolence.

Background, Dr. Rashid Buttar is an alternative medical practitioner who has, amongst other things, “therapies” to treat autism. He has been a major proponent of chelation. He is also notorious for his urine injections. Yes, urine.

Dr. Buttar was investigated by his state’s medical examiners. Again, from Orac: Rashid Buttar’s going down: The North Carolina Board of Medical Examiners finally acts

From a news report at that time:

The panel also found that Buttar exploited patients by charging exorbitant fees for unproven therapies that didn’t work. The panel recommended that his license be suspended indefinitely, but that the suspension be immediately stayed. Until the board decides, Buttar may practice without restrictions.

from a recent news story:

In that Michigan case, Buttar treated the child without having first performed an exam, a violation of the state’s medical practice act.

Did he “go down”? No. Dr. Buttar was able to benefit from laws he, himself, pushed through his State’s legislature:

Dr. Rashid Buttar, whose alternative medical practice in Huntersville has been under scrutiny by the N.C. Medical Board for a decade, has accepted a reprimand from the licensing agency.

But Buttar, who was facing potential restrictions to his license, instead can continue offering unconventional treatments as long as he asks patients to sign a form acknowledging his practice is outside the mainstream.

“This was a witch hunt from the beginning,” said Buttar, 44, whose practice attracts patients from 42 states and 37 countries. “They were trying to discredit me … but I didn’t do anything wrong.”

The consent order, signed Friday, marks the end of a battle that Buttar had vowed to take to the U.S. Supreme Court. He said he has spent “hundreds of thousands of dollars” defending himself against the board’s allegations that he exploited patients by charging exorbitant fees for unproven therapies that didn’t work and by arbitrarily ordering expensive tests to make more money.

In recent years, Buttar led a successful effort by the N.C. Integrative Medical Society to get legislators to change state law to make it friendlier to practitioners of alternative medicine.

Again, quoting Orac:

But back to why Dr. Buttar might have agreed to this consent decree. The answer becomes obvious if you peruse the actual consent order. All it does is to reprimand Buttar and order him (1) to provide informed consent to his patients dictated by the board; (2) to obey all laws, as well as rules and regulations governing the practice of medicine; (3) notify the board if he changes his address; and (4) meet with the board periodically. In other words, Buttar got a slap on the wrist.

“A slap on the wrist”.

Wow.

The top treatment listed on Dr. Buttar’s website is IV treatements which, as we know, include chelation. These have been “pioneered by Dr. Buttar” and the fact that the vast majority of the medical establishment rejects his ideas is a selling point:

However, the use of these highly effective treatments, suspiciously unpopular among traditional medicine regulators, is only determined by the medical providers in the clinic (ie, the Doctors, Nurse Practioners or PA’s).

Yes, your young child could sit with 7 other people in a room and stare at pictures of Pooh Bear (I wonder about the copyright issue on that?) while having an IV needle inserted to deliver “suspiciously unpopular” treatments. Here is the picture of his IV suite:

The main change between before the consent agreement and now is that all you have to do is sign a paper noting that you accept the fact that you accept the fact that these treatments have not been proven effective…

Do you think this “consent order” is anything more than a slap on the wrist? Here is a quote from it:

I understand and have been advised that the treatments and therapies that are to be provided by Dr. Buttar have not been proven effective by traditional research studies or conventional clinical trials and may not have been approved by the FDA for my diagnosis. Dr. Buttar makes no specific claims or representations that the treatments and therapies that he will be providing will be effective or cure the condition or diagnosis that I have.

Take a look at Dr. Buttar’s website (or the quote above) again.

However, the use of these highly effective treatments…

Yes, he’s still claiming that his treatments are “highly effective”, even though they “have not been proven effective by traditional research studies…”

Dr. Buttar was a part of the team involved with Desiree Jennings, the Redskins spokesperson who claimed the flu shot caused dystonia.

Dr. Buttar still has his supporters. From a recent story on this case:

Many of Buttar’s patients came to his defense in 2008. Among them was Elrene Thomas of Lexington. When contacted Tuesday, she was pleased to hear that Buttar can continue to practice. A retired nurse, she went to him for treatment seven years ago when she learned her breast cancer had spread to her spine. Instead of going through chemotherapy and radiation again, she tried IV infusions five days a week for months and had hyperbaric oxygen therapy twice a day for several weeks. She paid Buttar’s center $100,000 and said it was worth it.

“I really feel like he saved my life,” said Thomas, 77. “I’m not healthy in that I have stage 4 (cancer), but I’m surviving and I’m doing all these things that he taught me to do. I believe in his treatment.”

Yes, this is one of his success stories.

What do you call therapies a doctor makes up on his own, untested by “traditional” means? I would call that experimental. I think that is being generous.

Medical regulation exists for a reason. Slapping doctors on the wrist is not the reason.

Kathleen Sebelius and Francis Collins to speak at next IACC meeting

21 Apr

The Interagency Autism Coordinating Committee (IACC) will hold its next meeting on Friday, April 30. I checked the agenda for this meeting and found that Kathleen Sebelius, Secretary of Health and Human Services, and Francis Collins, Director of the NIH will be speaking.

The meeting will be videocast and available via telephone.

Here is the agenda for the next IACC meeting:

IACC Full Committee Meeting Agenda

Friday, April 30, 2010
9:00 a.m. – 5:00 p.m. Eastern

The Ronald Reagan Building and International Trade Center
Rotunda Room
1300 Pennsylvania Avenue, N.W.
Washington, DC 20004

Time Event
9:00 a.m. Registration

10:00 Call to Order and Opening Remarks

Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:05 Kathleen Sebelius
Secretary, Department of Health and Human Services

10:20 Welcome and Introductions of IACC Members

10:55 Francis Collins, M.D., Ph.D.
Director, National Institutes of Health

11:10 Break

11:25 Research Update: Autism Treatment Network
Geraldine Dawson, M.D.
Chief Science Officer, Autism Speaks

11:50 Research Update: Autism in the DSM-V
Susan E. Swedo, M.D.
Senior Investigator, Behavioral Pediatrics Section
Pediatrics and Developmental Neurospsychiatry Branch, NIMH

12:15 Lunch

1:30 Public Comments

2:00 Research Update: Stem Cell Talk

James Battey, M.D.
Director, National Institute on Deafness and Other Communication Disorders

2:25 Research Update: NIH Nonverbal ASD Workshop
Helen Tager-Flusberg, Ph.D.
Director, Laboratory of Developmental Cognitive Neuroscience, Boston University

Ann Wagner, Ph.D.
Chief, Neurobehavioral Mechanisms and Mental Disorders Branch, NIMH

2:50 Research Update: Building the Infrastructure for Comparative Effectiveness Research on Disability Issues
Rosaly Correa-de-Araujo, M.D., MSc, Ph.D.
Deputy Director, Office on Disability, Office of the Secretary

3:15 Approval of January 19, 2010 IACC Committee Minutes

3:20 Update: Planning Subcommittee
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC

3:50 Break

4:00 OARC Update

* 2009 Summary of Advances
* IMFAR Update

4:20 Public Comments Discussion Period
4:50 Closing Comments
5:00 Adjournment

Does autistic enterocolitis exist?

20 Apr

The piece below is from the blog justthevax, where it ran as “Independent” the Wakefield way (really something for the fail blog). I like this piece because, frankly, I wish I had done it. Catherina takes a look at the exact claims made by Dr. Wakefield’s supporters and shows that they are clearly false.

“Independent” the Wakefield way (really something for the fail blog).

One of the claims that keeps reappearing in the comments sections under articles covering the GMC ruling on Andrew Wakefield and colleagues is that

The key finding (chronic colitis found in ASD children) of Dr. Wakefield’s early case report published in The Lancet in 1998 HAS been independently confirmed by medical researchers in five different countries.

That is a very significant claim. After all, independent confirmation of a recent finding, would make the validity of a finding more likely, and if 6 independent laboratories found the same gut changes in autistic children, then then likelihood that this was a) a fluke or b) made up by Andrew Wakefield would be drastically reduced.

Finally, one of those commenters has posted those ‘independent confirmations’ – so I thought it might be worth having a look at them.

Krigsman, A. (Assistant Professor of Pediatrics, New York University School of Medicine Director of Gastroenterology Services), et al.,Ileocolonoscopy in Children with Autistic spectrum Disorder and Chronic Gastrointestinal symptoms. Autism Insights 2010:2 1-11.

Gonzalez, L., et al., Endoscopic and Histological Characteristics of the Digestive Mucosa in Autistic Children with gastro-Intestinal Symptoms. Arch Venez Pueric Pediatr, 2005;69:19-25.

Balzola, F., et al., Panenteric IBD-like disease in a patient with regressive autism shown for the first time by wireless capsule enteroscopy: Another piece in the jig-saw of the gut-brain syndrome? American Journal of Gastroenterology, 2005. 100(4): p. 979-981.

Balzola, F., et al., Autistic enterocolitis: Confirmation of a new infammatory bowel disease in an Italian cohort of patients. Gastroenterology 2005;128(Suppl. 2);A-303.

Galiatsatos, P., et al., Autistic enterocolitis: Fact or fiction. Canadian Journal of Gastroenterology. 2009;23:95-98.

Let’s look at number 1, Krigsman et al. The name sounds vaguely familiar. In fact, anyone who has read a little about the MMR-autism affair will know Arthur Krigsman as the clinical director of Thoughtful House, which happens to be the same Texas Clinic out of which Andrew Wakefield practises. One editor of “Autism Insight”, the journal in which this “independent confirmation” was published, is Andrew Wakefield (another one the senior author of the study, Carol Stott). Gosh, I bet peer review was harsh for this one.

Gonzales et al, number 2, has been published in “Arch Venez Pueric Pediatr” which stands for Archivos Venezolanos de Puericultura y Pediatría. It was a bit tricky to get my hands on the paper, especially since the citation was not quite right, but I did manage and was not surprised to find that indeed the authors cannot replicate Wakefield’s 1998 “findings” of a distinct autistic enterocolitis, although they do report a higher incidence of gastrointestinal problems in their autistic group.

Balzola et al, number 3, is a case report of one adult autistic patient with inflammed bowel.

Similarly, Balzola et al, number 4, is a meeting abstract (if anyone has access, could they email me that abstract, please) that never saw the light of day as a peer reviewed study.

Finally, number 5, Galiatsatos et al., is a case report, featuring two adult patients with gastrointestinal problems and an ASD diagnosis. The authors call for “more investigations” in their discussion.

So what do we have here? Three (3) genuinely published cases of autistic adults who had consulted a doctor for gastrointestinal problems and were found to have gastrointestinal problems. One conference report from April 2005 that has not gone through peer review and has not appeared in a real journal in the 5 years since the conference. One real study looking at over 50 autistic children which does not confirm Wakefield’s findings. And finally, one study by Wakefield’s buddies in a freshly founded journal run by Andrew Wakefield and his buddies, to say that their buddy Andy was really right all along – how is that for “independent” confirmation?!

Frontline: The Vaccine Wars

20 Apr

Frontline: The Vaccine War. I’ve already discussed this upcoming episode of Frontline.

Below is an extended press release they have for this episode.

I am very wary of giving groups like Generation Rescue any more media coverage than absolutely necessary. Their fake study, created for their appearance on the TV show “The Doctors” was a clear example of them using the media in what their own founder calls their effort to bring “… the U.S. vaccine program to its knees”.

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

But how do you discuss the “vaccine war” without those very people waging war on vaccines? How can you leave out Barbara Loe Fisher who has not only spent 20 years attacking vaccines, but has recently tried to silence Dr. Paul Offit with a baseless lawsuit?

That said, here is the press release for the Frontline episode:

Vaccines have changed the world, largely eradicating a series of terrible diseases, from smallpox to polio to diphtheria, and likely adding decades to most of our life spans. But despite the gains—and numerous scientific studies indicating vaccine safety—a growing movement of parents remains fearful of vaccines. And in some American communities, significant numbers of parents have been rejecting vaccines altogether, raising new concerns about the return of vaccine-preventable diseases like measles and whooping cough.

In The Vaccine War, airing Tuesday, April 27, 2010, at 9 P.M. ET on PBS (check local listings), FRONTLINE lays bare the science of vaccine safety and examines the increasingly bitter debate between the public health establishment and a formidable populist coalition of parents, celebrities, politicians and activists who are armed with the latest social media tools, including Facebook, YouTube and Twitter, and are determined to resist pressure from the medical and public health establishments to vaccinate, despite established scientific consensus about vaccine safety.

“Scientifically, I think the matter is settled,” says Anders Hviid, an epidemiologist at the Statens Serum Institut in Denmark. In one of the largest and most comprehensive epidemiological studies available, Hviid and colleagues analyzed data on more than a half million children and found no link between the MMR “triple shot” for measles, mumps and rubella and an increased rate of autism—a link that’s been strongly asserted for years by anti-vaccine activists. Similar epidemiological studies in Denmark also failed to reveal a link between the mercury preservative thimerosal and autism. In fact, around the world, peer-reviewed epidemiological studies have found no link between autism and either the MMR shot or thimerosal.

But vaccine skeptics like celebrity Jenny McCarthy, whose son, Evan, was diagnosed with autism following a series of vaccinations, including MMR, are convinced that further study into the other 15 pediatric vaccines and their additives will ultimately reveal a link. “Something happened. And when I say something, I mean a behavior, a trigger,” McCarthy tells FRONTLINE. “Is it mercury? Is it the schedule? Is there just too many? My answer to people and what I’ve been telling them is, ‘It’s all of the above.’ We don’t know for sure, which is why we keep saying, ‘Study it.’”

Further vaccine safety research is what businessman J.B. Handley, who founded the autism support group Generation Rescue, has been calling for, too. Handley tells FRONTLINE he has little doubt that vaccines are responsible. “There is no real-world study that shows me that those six vaccines didn’t cause my son’s autism.”

Nowhere has The Vaccine War grown more heated than in Ashland, Ore.—an area that FRONTLINE learns is of high concern to the Centers for Disease Control and Prevention. With an estimated quarter of the town’s children entering kindergarten not fully immunized, Ashland is one of the least vaccinated places in America. Despite the best efforts of local pediatricians like Dr. Donna Bradshaw-Walters, many parents are simply not convinced that vaccines do more good than harm, and they’ve been using Oregon’s religious and personal-belief exemption to get out of the state vaccine mandate. “I think a child’s immune system is so immature,” says Jennifer Margulis, an Ashland writer and mother of four who chooses vaccine exemption. “If you read the list of ingredients about what you’re putting intramuscularly into your child, it’s scary.”

According to public health workers, however, Margulis’ decision puts the entire community at risk. Vaccines don’t work for everyone, and in some kids the effects wear off, so it’s only when everyone—or almost everyone—is immunized that “herd immunity” is effective. “There are hundreds of thousands of people in this country who cannot be vaccinated,” says Dr. Paul Offit, the chief of the Division of Infectious Diseases at The Children’s Hospital of Philadelphia and the inventor of a vaccine for rotavirus. “They’re getting chemotherapy for their cancers, or they’re getting immunosuppressive therapy. They depend on those around them to be vaccinated.”

Bioethicist Art Caplan argues that society has the right to coerce its parents to vaccinate their children even if vaccines carry a small risk. “Parents don’t have unlimited rights with respect to the welfare of their children. You can’t kill them. You can’t put them at risk of fatal disease. You can’t put them at risk of devastating disability.”

Surveys reveal that America’s conversation about vaccines is complex, involving not only medical risks and benefits but also ideological beliefs about parental choice and the limits of government. “This is true even of individuals who see the benefits of vaccines as substantial,” political scientist Hank Jenkins-Smith tells FRONTLINE. “They still want it to be a choice. They don’t want it to be compulsory.” Government control over individual choice is another factor fueling the anti-vaccine backlash, despite the peer-reviewed science that vaccines are safe.

“People now have a way to get the information they couldn’t before, to communicate it to other people, and to have a robust public debate that is not controlled by money or political power or by government policy,” says Barbara Loe Fisher, president of the National Vaccine Information Center. “Physicians are going to have to get over the idea that they tell people what to do, and people are going to do it without questioning.”

Audience Engagement:
?Beginning one week before broadcast, Wednesday, April 21, visitors to FRONTLINE’s web site can interact with medical experts who will be responding to comments and answering questions. Visitors can also take a survey featuring five key questions about their attitudes toward vaccines, and find out how well their responses match responses from a nationwide survey.

The Vaccine War is a FRONTLINE co-production with the Palfreman Film Group. The writer, producer and director is Jon Palfreman. FRONTLINE is produced by WGBH Boston and is broadcast nationwide on PBS. Funding for FRONTLINE is provided through the support of PBS viewers. Major funding for FRONTLINE is provided by The John D. and Catherine T. MacArthur Foundation. Additional funding is provided by the Park Foundation and the FRONTLINE Journalism Fund. FRONTLINE is closed-captioned for deaf and hard-of-hearing viewers and described for people who are blind or visually impaired by the Media Access Group at WGBH. FRONTLINE is a registered trademark of WGBH Educational Foundation. The senior producer of FRONTLINE is Raney Aronson-Rath. The executive producer of FRONTLINE is David Fanning.

here, again, is the video clip Frontline has:

Social influences on the rise in autism prevalence

19 Apr

How much does “awareness” affect the increase in autism prevalence? Awareness has many aspects. News reports. Getting doctors to look and test for autism. One way is when someone in your neighborhood has an autistic kid. Does that have a measurable effect? The answer is yes.

In their paper, Social Influence and the Autism Epidemic, Ka?Yuet Liu, Marissa King, and Peter S. Bearman of Columbia University look into this using data from the California Department of Social Services (CDDS).

You may recall that I recently blogged on a paper where Marissa King and Prof. Bearman recently took a look at how diagnostic changes have affected the autism counts in the CDDS. The paper is Diagnostic change and the increased prevalence of autism.

Luckily, Steven Novella has already discussed this paper in detail in Social Factors in Autism Diagnosis. Also, the Autism Natural Variation blog has discussed this and extrapolated the current trends in The Administrative Prevalence of Autism is a Bass Distribution.

All this intro aside, what did Liu, King and Bearman find?

Despite a plethora of studies, we do not know why autism incidence has increased rapidly over the past two decades. Using California data, this study shows that children living very close to a child previously diagnosed with autism are more likely to be diagnosed with autism. An underlying social influence mechanism involving information diffusion drives this result, contributing to 16% of the increase in prevalence over 2000–2005. We eliminate competing explanations (i.e., residential sorting, environmental toxicants, and viral transmission) through seven tests and show that information diffusion simultaneously contributed to the increased prevalence, spatial clustering, and decreasing age of diagnosis.

In other words, if you live in California and you live near a family with an autistic child, you are more likely to obtain services from the CDDS for autism for your own child and be included in the CDDS count.

I’ve been meaning to blog this for a while. Prof. Bearman discussed this in a talk he gave at NIH, Understanding the Increased Prevalence of Autism. The link will take you to a page where you can watch the lecture. Sorry, I can’t figure out to embed the talk.

The talk was very interesting. Prof. Bearman discusses the autism cluster they found. He also discusses this social awareness effect.

A few notes from the lecture:

Prof. Bearman can account for much of the increase in the CDDS count. Four contributions he found are:

with diagnostic change–about 27% of the increase
advanced parental age–about 11% of the increase
spatial structure–about 2-3% of the increase
social mechanisms–about 16% of the increase

About 40-50% of the increase is still unaccounted for in his team’s analyses.

For those who are wondering:his team has not ignored vaccines. He doesn’t discuss them much,

One thing Prof. Bearman did find: vaccination rates go down in areas where autism organizations exist. For every autism organization in a given zip code, the exemption rate for personal beliefs increases by 24%.

One could ask whether this is just a sign that higher autism rates are the factors? In other words, is the presence of an autism organization a proxy for autism rate? The answer is no. The vaccine exemption rate does *not* depend on autism prevalence, just the presence of autism organizations.

In other words, autism doesn’t scare people out of vaccinating. Autism organizations do that.

Prof. Bearman’s group has two more papers I await: “Autism and the Hispanic Puzzle” and “Autism and Vaccines, revisited”. At the time of the lecture, the vaccine paper was “under review”.

The CDDS data are far from the “Gold Standard” dataset that some people have claimed. However, it is a valuable dataset and it is good to see a group like Prof. Bearman’s take on a serious, detailed look at it. If there is a real increase in the autism prevalence, it will take teams studies like this to find it.

Cool entry on another blog: Voices of Autism: a “lucky” mother’s perspective

17 Apr

Laura Shumaker is an author and also runs a blog on the San Francisco Chronicle website. I’ll admit, I haven’t read her book, “A regular guy, growing up with autism” yet. But every now and then someone sends me a link to her blog and I’ve liked what I’ve read.

In this piece, Voices of Autism: a “lucky” mother’s perspective, she let’s a guest blogger take the helm, Claire LaZebnik.

Claire talks about the progress her son made, from non-verbal to echolalic to mainstream with support to preparing for college.

It’s a nice piece, and well worth the minute or to to read.

She’s also had a piece in the New York Times, Adolescence, Without a Roadmap which I enjoyed and, I’ll admit, is what prompted me to write this piece linking to her work.

This section caught my eye:

“Hey, Mom?” he says as we’re walking out of a store. “That girl was hot.” He thinks he’s talking in a whisper but he isn’t, really, because he has voice modulation problems and has trouble hearing what his own voice sounds like. The lifeguard in the bikini at the beach is also “hot.” So is Jessica Alba, whose picture he printed and carefully glued onto his binder, next to a photo of Keira Knightley.

The term “hot” may be an affectation he picked up from his friends, but his appreciation of skinny girls with big breasts seems to be genuine, as we realized when we discovered he’d started using the Internet the way other teenage boys are likely to only when they think no one is watching.

We put content filters on our browser software, and his father sat down with him to go over some basic rules: Wait until you’re in love to have sex. Always wear a condom. Hide your pornography where your mother won’t find it. He’ll remember all this because they’re rules, and he’s very good at remembering rules.

Those links again, just in case:

Voices of Autism: a “lucky” mother’s perspective

and

Adolescence, Without a Roadmap

PBS Frontline: The Vaccine War

16 Apr

I first heard that the show Frontline, from the Public Broadcasting Service (PBS), would be doing a show on “The Vaccine Wars” by reading comments posted online by supporters of groups like Generation Rescue. I was somewhat taken aback that they were happy to hear this was coming as Frontline is a very evidence-based show. I couldn’t see it being very supportive of Jenny McCarthy.

Frontline’s website had this to say about the show:

Public health scientists and clinicians tout vaccines as one of the greatest achievements of modern medicine. But for many ordinary Americans vaccines have become controversial. Young parents are concerned at the sheer number of shots–some 26 inoculations for 14 different diseases by age 6–and follow alternative vaccination schedules advocated by gurus like Dr. Robert Sears. Other parents go further. In communities like Ashland, Oregon, up to one-third of parents are choosing not to vaccinate their kids at all. And some advocacy groups, like Generation Rescue, argue that vaccines are no longer a public health miracle but a scourge; they view vaccines as responsible for alarming rises in certain disorders, including ADHD and autism. This is the vaccine war: On one side sits scientific medicine and the public health establishment; on the other a populist coalition of parents, celebrities (like Jenny McCarthy), politicians and activists. It’s a war that increasingly takes place on the Internet with both sides using the latest social media tools, including Facebook and Twitter, to win the hearts and minds of the public.

I guess I am not on the “latest” social media tools, but I am blogging on the topic so I figure I count as a small part of the “war”.

Reading the above I felt that “The Vaccine Wars” was not going to be the Jenny McCarthy friendly show some were expecting. Being put on the side against “scientific medicine” is usually not a good thing. Also, Generation Rescue tries to pitch itself as being “pro safe vaccine” rather than anti vaccine. I doubt they would like to see themselves as being characterized as arguing “that vaccines are no longer a public health miracle but a scourge”. Then again, times may be changing with the founder of Generation Rescue stating:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

That’s hard to fit into a “pro safe vaccine” image.

One way to tell for certain if Generation Rescue and other groups are afraid of upcoming media attention is when they start attacking spokespeople like Paul Offit (chief of infectious diseases at the Children’s Hospital of Philadelphia, and co-inventor of the RotaTeq vaccine against rotavirus). When that happened (recent blog posts on the Age of Autism, resurrecting old, incorrect information) I knew it was likely that “The Vaccine Wars” was not going to be a pro-Jenny program.

As it turns out, a video clip has been added to the Frontline website for “The Vaccine Wars”:

And, guess what, Dr. Offit was interviewed by Frontline for the piece.

The show airs on April 27th, and will be available online then as well.

Perhaps it is time for those who support the vaccine-causation idea to re-evaluate their position. I can’t tell how many times I’ve been told I need to be “open minded” about the subject. Open minded includes being willing to admit that your ideas on vaccines-causing-autism were wrong.

Let’s see–

One of the main proponents of the idea, Dr. Andrew Wakefield, was found to be unethical and dishonest
The two main theories, really the only two theories, have failed (“not even close”) in the courts
The media is moving away from giving the vaccine-causation idea much weight.

Of course, maybe I’m wrong. Maybe FrontLine will finally tell the story the vaccine-causation groups believe. Maybe they will uncover the vast conspiracies that are hiding the truth. Maybe. I doubt it.