As an aside from the vaccine debate, I think we all need to say, “Go Charlie!!!”. I’ve read about Charlie (and dad) and the bike rides, now I’ve seen it. Good job, master Chew!

Here’s the Today Show segment:

The part with Kristina shows up about Minute 4 of the video. Kristina discusses bike-riding Charlie on the Today show on her blog.

The first part, as you can imagine, is about Dr. Offit and the vaccine/autism question. This story starts by focusing on the controversy–centering on the anger that has been focused on Dr. Offit.

The middle section (again, about minute 4) has Kristina Chew and family.

There is a very interesting exchange at the end between Dr. Nancy Snyderman (who ran the piece) and Matt Lauer of the Today Show. Dr. Snyderman does a good job of keeping Matt Lauer from pushing promoting the idea that the question is “controversial”. Matt Lauer pushes the idea that it is controversial amongst parents, while Dr. Snyderman keeps to the theme that this topic is far from controversial in any real debate.

Kristina notes on her blog:

The vaccine-autism issue aggravates because it diverts attention from autistic children, from autistic individuals, and fixates on what (despite more and more evidence to the contrary) some believe is a cause of autism.

But, we play the hand we are dealt. Unfortunately, that hand right now contains the vaccine-debate. I, for one, am glad to see Kristina taking on the question in the public eye.

But, in the end, the important stuff–Go Charlie!

I rest my very tired head, every night…I say my prayers and thank God for giving me the ability to be these children’s Mother. I thank God for the blessings I have received. I thank God for letting me be Outnumbered…because, through my husband and my children, I have been more blessed than I can ever have imagined.

One event for the week was the publicity for the “Stop Jenny” website. This was picked up by PZ Myers’ Pharyngula blog (a very well read, non-autism blog). Respectful Insolence (also high-volume, non-autism blog) plugged the site as well. In the autism-blog realm, this site (autismlibrary.org) and AutismVox noted StopJenny.com as well. A website with a similar mission, the non-generation-rescue-non-Jenny-McCarthy rescueangel.org gives a discussion how there are adverse events associated with biomed treatmements.

StopJenny has broken out, even beyond the ScienceBlogs (PZ Myers), into Bad Astronomy, via SkepticDad.

Another event for the week was the Every Child by Two call for action. ECBT has its membership asking for the Oprah Winfrey Show to take a look at vaccines and the vaccine/autism question from a different perspective than they’ve done with Jenny McCarthy. We joined in the call, as did LeftBrainRightBrain and I speak of dreams.

Fat Doctor picked it up from I speak of dreams. It is always interesting to see how some of the autism topics are playing out amongst the non-autism community. The comments there range from the usual “there’s antifreeze and aborted fetal tissue” inaccuracies to a comment like this fraction of a message sent to Oprah:

Please consider providing a counter-point. Physicians, scientists, public health workers and legislators are working together to improve the health of our communities. Please give them the same voice you gave Jenny McCarthy. Consider having the mothers of children who’ve died from these diseases *in the last year* on to show the human cost of poor immunization rates. Consider bringing in the parents of autistic children who haven’t been “cured” by Ms. McCarthy’s plan… parents who are frustrated at the diversion of precious Autism research funding to red herrings like vaccination & heavy-metal-toxicity.

On the flip side, Respectful Insolence makes a good argument that approaching Oprah to do a show on vaccines and autism is problematic. A good discussion and a good-ratings TV show are very different things. It is likely (and something promoted by many who support Jenny McCarthy) that Oprah might try to make it a debate rather than a discussion by bringing people like Jenny McCarthy and doctors like Dr. Jay Gordon to the show.

Jenny McCarthy has already shown the tendency to leave good manners (as in shouting obscenities) or accurate discussions behind her when the cameras are rolling (she might do the same without the cameras, but I have not been there to see it). A good example of this is her discussion of her son dying after vaccination. I will never downplay the experience she went through. But, her phrasing has led many to think (and state on the internet) that Jenny McCarthy’s son had his seizure immediately following an injection. Based on the story (that his first seizure happened at home as he was waking up), this seems incorrect. It’s a misperception that should be corrected, yet Ms. McCarthy has not, to my knowledge, taken the opportunity to do so.

One a better note, I have to admit that I am a sucker for a cool blog-post title. I got pulled in by Runman’s 1st Annual halloween Hustle 5km Fun-Run. I spotted this link, talking about the Road-ID bracelet. I’ve been meaning to talk about those, and add something to the main site as well, for a while.

Kathleen Seidel’s Neurodiversity.com weblog has a new post up. That blog has a low volume but high impact. The posts are detailed and thorough. This post has to do with another case of overcharging by lawyers and experts in the Vaccine Court. The title, A Motion to Conceal, tells a lot. For the first time, a petitioner asked that the lawyer’s and expert’s names be redacted from a decision.

ABC, through their news and Good Morning America shows, has started “On Call Plus Autism“. This is a series of short videos on various topics in autism.

It turns out Drive Mom Crazy will be a on “On Call Plus Autism”. Another hub blogger was featured in the Good Morning America hour on autism that we’ve discussed before.

I try to end on a lighter note. This week, it’s from LeftBrainRightBrain, who report that an autistic adult has taken to reading Autism’s False Prophets on YouTube. Here’s the “commercial” for “Story Time with Darwin”"

Blogs have been covering Jenny McCarthy since her first book. There are also websites from established organizations which have information that counters much of what Jenny McCarthy promotes. But, recently there have been a couple of websites by the autism community itself which are seeking to correct the misconceptions.

The first is StopJenny.com. I’ve known about this site for a little while, but recently I saw it get plugged by some very high traffic sites:

Pharyngula
Respectful Insolence
AutismVox

From a comment on Respectful Insolence, by the authors of StopJenny.com

There are not two sets of rules. The author of the www.stopjennywebsite.com has been requesting critiques all along to make sure the information is accurate. The author then CHANGES the information when shown why any information is inaccurate. Others are not so willing to do so, and freely keep on spreading misinformation. As you can already see, the www.stopjenny.com website has already been corrected, and linked to better sources. Unlike Jenny McCarthy, the website does not propose cures, does not offer medical advice, and does not profit in any way. We are laypersons attempting to undo the damage McCarthy et al are doing. It’s the laypersons that get hurt the most by McCarthy et al. We continue to ask for critiques, appreciate the feedback, and will continue to make any necessary changes to fulfill our purpose to educated and protect those that are being duped by people profiting off of laypersons with books and other products that are promising fake cures. We continue to hope to show why Jenny is wrong. Please email information@stopjenny.com to help us with our purpose.

As an aside, Pharyngula “Poll Mobbed” a Jenny McCarthy web-poll recently. Just an example of how well-read that blog is.

A second site that has been showing up in Google ads recently is RescueAngel.org. No, it isn’t affiliated with Generation Rescue or Jenny McCarthy (as made very clear on the site). Instead, it is a site which gives a description of some of the examples of adverse events associated with “biomed” therapies and autism. Yes, there are times when biomed seems to cause harm. Most biomed therapies, though, are completely untested and there is no one reporting on the adverse events. So, who knows what could be going wrong.

On the one hand, people could (and have) argue that showing a division like this in the autism community is detrimental. If we don’t present a united front, it will diminish our ability to advocate effectively.

I am of another opinion: If we don’t police ourselves, if we don’t point out when segments of the autism community are acting in a reckless manner, we will be in much greater trouble when we try to advocate.

While the name “StopJenny” may sound amusing, it is no joke. Left unchecked, Jenny McCarthy’s “advocacy” will result in people dying from vaccine preventable diseases. It has already happened in the U.K.. Jenny McCarthy seems to be ignoring one of the real lessons to be learned from Dr. Wakefield.

Probably the big news item for the week was the Presidential Debates. Senator McCain pulled autism as a discussion point with

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

And,

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children — precious children who have autism. Sarah Palin knows about that better than most. And we’ll find and we’ll spend the money, research, to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

It seems to have backfired. Many blogs commented negatively–and these are autism-specific blogs. LeftBrainRightBrain had McCain Courts the Autism Vote. Autism Street had McBain on Autism, Again. Both posts were up immediately after the debates.

From AutismStreet:

Sarah Palin knows about that better than most? We’ll find “the cause of autism”? It’s really a shame that a grown man doesn’t seem to have the appropriate judgment to reserve comment on issues for which he seems to have no specific knowledge. I mean really, several causes of autism are already known. It’s difficult to think this is not a simplistic, completely uniformed conclusion, formed by listening to those who promote the scientifically unfounded notion of an “autism epidemic”.

I’m sure his intentions are good, but in my opinion, ignorance does not deserve a vote.

ScienceBlogs bloggers chimed in: Respectful Insolence with Autism in the Presidential Debate?, and Thoughts from Kansas with McCain on Autism.

Respectful Insolence had, well, a respectfully insolent approach:

Was it just me, or did anyone else find it jarring when suddenly John McCain interjected special needs children and autism into the debate last night? As you may recall, a few months ago he was tripped up by the antivaccine fearmongers who think, despite an absence of scientifically compelling evidence supporting their view, that vaccines cause autism.

AutismVox discussed McCain and Obama Debate: Down Syndrome, Autism, Special Needs (a post with a big banner ad for the McCain/Palin campaign when I read it!). Kristina Chew (AutismVox) quoted non-autism blogger Andrew Sullivan’s post at The Atlantic, Special Needs. Andrew Sullivan’s post was quite short, and I hope he doesn’t mind me quoting it entirely here:

I was curious about McCain’s apparent conflation of Down Syndrome and autism. They are very different ways of being human, but they do come under the same umbrella of “special needs” according to Wiki.

That “…very different ways of being human…” comment was just a wonderful way to make the statement.

I expected the response to the debate to be divided amongst the autism blogs on vaccine/non-vaccine lines. Judging by the comments on some blogs, even the vaccines-cause-autism people weren’t happy with Senator McCain’s approach to autism. David Kirby came out with a blog post on the debate, Last Night’s Autism Debate — Who Will Win the Special Needs Vote? Wow, he missed the mark. In his effort to push the vaccine-autism notion, he totally missed the idea that lots of people on both sides of the vaccine question were unhappy with Senator McCain. I wonder if he read is fellow Huffington Post blogger Janet Grillo, My Autistic Son is Not a Political Pawn. It’s tough to read through the comments to the blog, as it devolved quickly into the usual “mercury causes autism” discussions that are old, tired and off-topic. That said, here is the top comment when I read the post (on Thursday afternoon):

As a mother with 2 Autistic boys it will be the Obama/Biden ticket hands down. Obama has had a plan posted on his site, specific to Autism, for some time now. It’s a real approach and concern not just a comment solely for a vote.

Even comments from “epidemic” minded people weren’t for Senator McCain:

Being the mother of a 10 year old autistic son, I have looked very closely at both candidates and their running mates, and questioned who would better handle the issues. Hands down it is Obama/Biden. Obama really is empathic about our epidemic and sees a need to fund some studies, to find out what is going on and how to help deal with it.

Frankly, I think people saw a lack of substance in Senator McCain’s comments. Yes, he mentioned autism, but autism parents have learned to read through comments that have no teeth. Anyone who has been through a couple of IEP’s knows the difference between, “We will work on that” and “Here is a measurable goal that we will work towards, and here are the resources we will apply to it.”

David Kirby seems unable to see that Senator McCain’s statements were pretty clearly not putting autism as a major focus, but, rather was trolling some carefully phrased statements in an attempt to curry favor with a constituency–without giving anything tangible in return. Either that, or it didn’t fit the message David Kirby was crafting.

Another comment from his blog:

I have an 11 year old with autism. While I’d love to know someday what caused it definitively (although in my opinion there’s a pretty clear genetic component – not a cause, but a component) I’m much more focused on making sure he has access to quality health care, educational and vocational opportunities. Obama’s plan has a focus on that as well as basic research.

The Obama camp seems to think Senator Obama did so well on this question that they blogged it too.

But, enough of the election.

Earlier in the week, there was much discussion about Measles. EpiWonk had an Op-Ed piece in the Atlanta Journal Constitution on MMR and Autism, followed by a blog post. That gathered responses from LeftBrainRightBrain, with a followup discussion of one of EpiWonk’s own papers on the effectiveness of the Hib vaccine.

LeftBrainRightBrain has an occasional guest blogger from the UK research community. He chimed in this week with a post on The Truth about Andrew Wakefield.

Denis Leary (I’ve got to admit, I’d never heard of him before) got some press for a book, part of which took issue with autism. Think of the recent comments by Michael Savage (whom I unfortunately had heard of), but in print. I won’t quote what he said, but you can read what Emily has to say about it at DaisyMayFattyPants, with Leery of Leary. Kristina at AutismVox took a look with Denis Leary does a Michael Savage. Marla Baltes chimed in with According to Dennis Leary, I am an inattentive mother and my child is stupid. It didn’t just get outrage from the autism community, as The Butterworth Group made clear in Denis Leary’s an A-hole.

A new face has entered the vaccine-autism-alternative-medicine debate. A Canadian Doctor named Moulden made comments about how autism (in his model) is caused by micro-vascular strokes, which, in turn, are caused by vaccines. The concept was given a Respectfully Insolent response in Vaccines cause “microvascular strokes” that cause autism? The idea and presentation by Dr. Moulder is bad enough to look like a parody. And, yet, I’ve seen discussion groups take him and his ideas quite seriously. It is depressing, really, to see such junk science taken seriously by families who might be spending time, money and emotion on this (reportedly delicensed) Doctor.

That’s so sad that it’s time to bring this back to where it started: did you see that Tito has a new blog post?

This addition is sWell, written by Dr. Rahul Parikh. Dr. Parikh is a pediatrician with Kaiser Permanente, an HMO. He is based in Walnut Creek–about 40 miles east (and a little north) of San Francisco. Think Berkeley, go east over the hills, and you are in Walnut Creek.

sWell isn’t all about autism (and that’s a good thing!). But, Dr. Parikh has a fairly long history of taking on the tough questions about autism in the press and on blogs. He’s been a commenter on David Kirby’s Huffington Post blog posts. But, his activity with autism goes back farther than that. He’s been a semi-regular in San Francisco Bay Area news papers, often correcting statements made by Rick Rollens.

Here’s a few examples of his blogging:
McCarthyism (on, no surprise, Jenny McCarthy)
Deconstructing David Kirby, where he looks at David Kirby’s briefing in Washington D.C.
David Kirby Smacks Me Down, where he responds to a blog post David Kirby did on Dr. Parikh.

David Kirby was “smacking down” Dr. Parikh based on Dr. Parikh’s review of Paul Offit’s book, Autism’s False Prophets.

He also writes “Vital Signs” for Salon (here’s an example, non-autism column there), with many varied subjects. One that has the attention of the autism community is What the Poling autism case means.

As noted above, Dr. Parikh has taken on medical issues, including autism, in the press. In the San Francisco Chronicle, he has taken on issues such as using the internet for medical advice (Beware Dr. Google), obesity, and, well, autism. One article, The Truth About Autism, takes on issues such as vaccines and the “epidemic”. You can imagine with a title talking about “the Truth” about autism, while taking on these firmly held beliefs of some, he was not popular amongst the vocal constituents of the autism community in California. He has in the press also discussed parents who show up to doctor visits with their binders of papers in hopes of educating doctors with “The Truth”. To the groups of parents with binders of papers, filled most likely with papers from the journals “Medical Hypotheses” and “Journal of the American Physicians and Surgeous” and others written by the likes of Mark and David Geier, Dr. Parikh is, again, not popular.

But, science and medicine are not popularity contests. In a doctor/patient relationship, the doctor should be the expert. Patients should educate themselves, but, in the end, typically only the doctor went to medical school. Doctors should be open minded. But, so should patients (and their parents). If someone shows up at a doctor’s office with a binder of papers, the patient should accept the fact that some journals are not very good, and some research is just plain bad.

What Dr. Parikh is doing is not popular amongst the vocal segments of the autism community. But, it’s important. I thank Dr. Parikh and I wish there were more like him.

First, the blog posts on the PETA “Got Autism” campaign.

Perseveration.org tried to post a comment to the PETA blog, but it didn’t appear. The comment was very good, and Perseveration.org posted it here.

Many blogs carried Ari Ne’eman’s (from ASAN) letter. AutismLibrary.org did, but it was also carried by Maternal Instincts, Asperger Square 8 and Wrong Planet, and LeftBrainRightBrain, to name a few.

I’m always impressed by the images on Asperger Square 8, and She did a great job with the PETA billboard.

Kathleen Seidel at Neurodiversity.com blogged about the lack of conflict of interest statement in Dr. Poling’s paper he wrote on his daughter, Hannah Poling, during the time that their family had a claim filed in with the vaccine court. Ms. Seidel blogs are extremely thorough and extremely well supported. In this case, she works from three letters that were recently published in the Journal of Child Neurology.

EpiWonk, who is on the blogroll here, wrote an Opinion/Editorial piece for the Atlanta Journal Constitution on the MMR vaccine. He followed up with a blog piece. This was followed up at Respectful Insolence and LeftbrainRightBrain. While not on MMR or measles, this also inspired a post on the Hib vaccine, using a paper by EpiWonk that shows clearly how effective this vaccine is and how important it is to get to children at an early age.

ScienceBlogs completed their book club on Autism’s False Prophets, a book by Paul Offit. Dr. Offit contributed, along with bloggers Orac, Robert Park, Kristina Chew and Kev Leitch.

Kristina Chew’s Autism Vox has such a prodigious output that it’s tough to pick a few out during the week. AutismVox is worth checking often.

The Orange County (California) Register has a blog on autism. This week there was much discussion about having the word “epidemic” in the blog’s title.

For a break from the main topics of the autism blogging community, check out “Sunday Solutions” at LeftBrainRightBrain.

After posting that, I sent the following email to Dr. Healy through the web-based interface at US News and World Report, where she works.  I sent the following:

I have some questions for Dr. Bernadine Healy. I would appreciate it if you could forward this to her.

Dr. Healy, I have followed your coverage of the autism/vaccine question closely. I found some of your statements about the IOM and their report and recommendations somewhat troubling as they call into question the motivations and intent of IOM in its approach to and conclusions from the 2004 report on vaccines and autism. Given the serious nature of your assertions, I approached the IOM directly for a comment on the process and conclusions. I have quoted it below:

http://autismlibrary.org/blog/asking-the-iom-for-clarification/

Would you be able to comment on how your statements can be reconciled with the IOM’s stated methods? Is there anything more substantial to your assertions than what is already in print? Because, I will state frankly, what I see are assertions on your part. They have been left unsubstantiated for too long. The effect they have on the autism community are great and we deserve more than assertions.

I appreciate your time in this matter.

Since that time, Mr. Dan Olmsted at the Age of Autism made a blog post entitled, “Tell it to Dr. Healy”. He also added a permanent page to their blog with video of the Dr. Healy interview.

Well, I find it interesting, as I did “tell it to Dr. Healy”.

It’s been two weeks since I sent the email. It appears that “telling it to Dr. Healy” results in no response.

Dr. Healy’s comments add to the erosion of confidence in our trusted institutions.  The Age of Autism is correct that this is a big issue–big enough that Dr. Healy and Sharyl Attkisson should have supported what are merely assertions.  As a journalist, I would expect that Dan Olmsted should see that major weakness in the interview.  Perhaps he does, but he doesn’t even mention it.

If I recall correctly, the Court of Federal Claims (a part of which is the “vaccine court”) is soon to hold their annual Judicial Conference.  Dr. Healy was supposed to participate as a panelist and Sharyl Attkisson was supposed to be the moderator of a session on the autism/vaccine debate and the media.

In many ways, I wish that this session had not been cancelled.  Had Dr. Healy made her usupported statements again and had Sharyl Attkisson handled the discussion with the same lack of objectivity that appears in her journalism, the Special Masters would have seen it easily.  Yes, certain groups would have made great hay out of this, but in front of an educated audience like the Judical Conference, I’ll put Arthur Allen with facts and science against clearly biased moderator and a doctor with clearly unsupported assertions any day.

Prometheus goes beyond the paper and gives a good discussion of mitochondrial genetics, the potential effect of toxins on mitochondria and other questions very prominent in many discussions.

A very short discussion was given by Prometheus in the comments at the LeftBrain/RightBrain blog, here.

Not to give away the punch lines from Prometheus, but not everything you may have read about this paper, or the effect of toxins on mitochondria may be accurate.

Epi Wonk (that’s me) has a Ph.D. in epidemiology. I worked for more than 30 years as a professor in medical schools and schools of public health and as a senior epidemiologist at the CDC. I have been the editor of three medical journals. I am now retired.

Much of the work in autism is epidemiological in nature. There is a lot of basically “armchair” epidemiology that goes in in the blogs. It is good to see the views of someone who actually knows epidemiology.

It’s well worth reading epiwonk and keeping track of the autism posts there.

The first blog I’ve chosen* is “AutismVox“. Kristina Chew writes it. Kristina (just in case you didn’t follow the link) is a professor of classics. She writes about her family, their experiences with autism, plus current events in autism, autism science and autism politics.

She is prodigious. She also get’s good information and get’s it fast. I’ve gotten what I considered to be pretty fresh information only to find that Kristina already has commented on it on her site.

She covers some of the controversial subjects, and that sometimes brings some, well, spirited comments. Kristina keeps the discussions on a very polite level.

Anyway, it’s worth taking a look: AutismVox.

*Edit: note that I posted one other blogroll description first. This one was the first I wrote.