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!

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?

Instead, let me talk about an hour of Autism (yes, an entire hour, not just an interview/book-plug). Yes, there were celebrities: Joe Mantenga and Didi Conn.

http://autismlibrary.org/blog/wp-admin/post-new.php

In my book, Ari Brown is a bit of a celebrity…but I’m weird that way. GMA (Good Morning America) also had Ken Reibel (autism parent and journalist) and Dr. Lou Cooper (former head of the American Academy of Pediatrics).

The show was hosted by ABC news medical correspondent Dr. Timothy Johnson. The show was pretty good. No one shouting insults at others…none of what I’ve come to fear from talkshows about autism.

The show was split into six segments–here they are:

Segment 1: Autism Up Close (introducing the subject and the people)

Segment 2: Autism Stories from the Spotlight (where they get the parent’s stories)

Segment 3: More Stories from the Spotlight (more from the parent’s view)

Segment 4: The Autism-Vaccine debate (looking at “the elephant in the room”)

Segment 5: Treating Autism (without a long discussion of diets, antifungals, chelation…thank god)

Segment 6: Autism Advancements

A good set of videos for someone starting out and looking for some good information.

The director of the program lists credentials as a masters and doctorate from NYU, and a BCBA certification. The parents are questioning this, asking for evidence. The school district is asking for proof of credentials.

This raises the obvious question (already asked by the parents): why didn’t the district check credentials before hiring this organization as a vendor to provide therapy?

The parents further allege, and claim to have the invoices and timesheets to prove it, that the agency was billing for times that no therapy was provided.

The agency is reported to be out of business.

It looks like a huge mess. It is easy to spin this as “ABA therapists are bad”. But, I don’t see it that way. There will always be people attempting fraud, pushing the boundaries in a bad way.

What I like to see here is the parents reporting the problems. It can be very difficult to complain about a therapy provider. A parent may not want to appear to be a troublemaker. In this case, they had numbers, but note that they still want to remain anonymous.

Some of the parents had used the same agency for private-pay therapy before the school district took over responsibility. The parents are upset that the School District didn’t ask for credentials–when some of the parents themselves didn’t either during their private-pay time.

Yes, the parents should have done this due-diligence and asked for credentials. At the same time, it is really hard to push a therapy provider like that when you are on a waiting list and don’t know if/when your child will start autism-specific therapies.

As I said, it’s a big mess. Nothing is yet proven, and there aren’t a lot of details available. But, as I noted above, I think if something like this happens, it’s good that the parents are reporting it. It is tough, but in order to keep credibility, parents need to do some checking and policing.

That all said, if this is true, and this business philosophy affected the therapy quality or quantity due the kids, much more should happen to the agency than just going out of business. Shorting a kid in need is beyond criminal.

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.

By the time the story gets back to you, it has completely changed.

Now imagine that people aren’t whispering, but instead commenting in the press or blogs. Imagine that instead of some nonsense story it’s about public health.

That’s basically what is happening right now. Dr. Andrew Wakefield, of MMR/autism “fame”, is apparantly repeating what he thinks he heard from people who think they understood what others have said and done.

Sound confusing?

Well, let’s start with Dr. Wakefield’s comment. It’s the end of the chain and the message has been very garbled.

Dr. Wakefield is quoted by the UK paper, the Sun . In this case, he has misquoted Dr. Healy and, I believe, mixed in some misquotes of Dr. Gerberding (head of the CDC) as well. Dr. Wakefield is quoted as in the recent news article saying:

Bernadine Healy, the former head of the US National Institute for Health, admitted they had altered evidence on the epidemiological studies conducted by the US Government to suit the official line. She admitted the evidence both the US and UK relies on is useless.

Where did that come from? Is there an interview with Dr. Healy, or statements by her that I haven’t seen?

I’ve commented a few times about how I felt Dr. Bernadine Healy’s assertions on autism research needed to be supported before published. First, I commented that Dr. Healy’s comments were basically unsupported assertions, and that they were not supported by statements from the Institute of Medicine. I tried to contact Dr. Healy, with no response. But, in reading her statements, I’ve never read anything that supports Dr. Wakefield’s version of what Dr. Healy supposedly said.

First off, even Dr. Healy has not said that the NIH or anyone altered evidence. If someone can point me to a statement by Dr. Healy that could even be misinterpreted to support Dr. Wakefield’s comment, I’d like to see it.

As an aside, consider what Dr. Wakefield is doing by invoking Dr. Healy’s former position as director of the NIH, then claiming that she “admits” they altered evidence. Dr. Wakefield is implying an official statement by an insider. This is why Dr. Healy had a deep responsibility to make sure her statements were clear and well supported, two things she did not do in her interview. That is why I believe she should step forward and make it clear that Dr. Wakefield’s comments do not reflect what she said.

Back to Dr. Wakefield’s comment–Dr. Healy did not state that the evidence is useless. She made comments that more studies should be done, concentrating on the “people who got sick” (or something close to that). Dr. Healy neglected to note that many studies already have looked at people with autism and, for example, whether they have persistent measles infections. And, that was before the Hornig study came in.

I believe that Dr. Wakefield here is mixing up Dr. Healy’s comments with a misinterpreted version of comments by Dr. Julie Gerberding. This isn’t to say that Dr. Gerberding claimed the evidence is “useless” either. However, Mr. David Kirby has tried (somewhat succesfully, I note with regret) to propagate that myth.

For the details, read Epiwonks analysis of the David Kirby’s first first and posts on this. (it’s worth taking the time to read through those on their own–not just as support of this discussion!)

David Kirby propagated a mistaken impression that Dr. Gerberding thinks the VSD studies (including that of Dr. Verstraeten) were flawed (read Epiwonk one and two)

We have Dr. Bernadine Healy who commented that she considers that the correct studies haven’t been done (but, they have, and more have been done since her statements.)

Somehow, these stories got repeated, mixed up and told to Dr. Wakefield who is now repeating a completely messed up version for the U.K. press.

After many generations of repeating the stories, they are hopelessly separated from reality. Assuming this is correct and Dr. Wakefield didn’t create this story himself, who is at fault? Dr. Wakefield for not checking the quotes from Dr. Healy? The reporter for not checking the validity of what Dr. Wakefield said? Dr. Healy for making unsupported assertions? David Kirby for making what are fatally flawed and misleading blog posts?

Assigning blame is actually secondary–how do we keep this sort of misinformation from propagating?

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.

Healy said: “There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. “First of all,” Healy said, “I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show.”

This statement bothered me.  The IOM is part of the National Academies.  I know people who are members of National Academies (although not the Institute of Medicine), and Dr. Healy’s assertion is completely at odds with how they act.  There is often a call for “independent” research or analyses from groups within the autism community.  Well, that’s the National Academies.  They are the independent voice that the government can call on to analyze research and report back.

They give a description of their purpose on the National Academies website:

The National Academies perform an unparalleled public service by bringing together committees of experts in all areas of scientific and technological endeavor. These experts serve pro bono to address critical national issues and give advice to the federal government and the public.

Another good place to look for a description of the National Academies is here.

Given my concerns, I went to the source: the National Academies. I emailed them links to some news stories and expressed some concerns that this image of the IOM was damaging, not only to them, but to the autism community as well. Below is the response I received (reproduced with permission):

Thank you for your recent and very thoughtful message. As you know, the IOM’s Immunization Safety Review Committee most certainly did not suggest that scientific inquiry into the role of vaccines in autism should cease because the results could affect public perception of the value of childhood vaccinations. The public deserves better than that.

The committee’s 2004 report, Vaccines and Autism, states:

“Determining causality with population-based methods such as epidemiological analyses requires either a well-defined at-risk population or a large effect in the general population. Absent biomarkers, well-defined risk factors, or large effect sizes, the committee cannot rule out, based on the epidemiological evidence, the possibility that vaccines contribute to autism in some small subset or very unusual circumstances. However, there is currently no evidence to support this hypothesis either.”

After a paragraph in which the report follows that sentence with a discussion of the sparse literature regarding subsets of autism and the theoretical possibility of a vaccine-susceptible subpopulation, the report states:

“While the committee strongly supports targeted research that focuses on better understanding the disease of autism, from a public health perspective the committee does not consider a significant investment in studies of the theoretical vaccine-autism connection to be useful at this time. The nature of the debate about vaccine safety now includes a theory that genetic susceptibility makes vaccinations risky for some people, which calls into question the appropriateness of a public health, or universal, vaccination strategy. However the benefits of vaccination are proven and the hypothesis of susceptible populations is presently speculative. Using an unsubstantiated hypothesis to question the safety of vaccination and the ethical behavior of those governmental agencies and scientists who advocate for vaccination could lead to widespread rejection of vaccines and inevitable increases in incidence of serious infectious diseases like measles, whooping cough, and Hib bacterial meningitis.

The committee urges that research on autism focus more broadly on the disorder’s causes and treatments for it. Thus, the committee recommends a public health response that fully supports an array of vaccine safety activities. In addition the committee recommends that available funding for autism research be channeled to the most promising areas.”

Some readers have apparently failed to appreciate the full meaning and intent of the committee’s carefully written text. The report, as supported by the above-quoted paragraphs, clearly acknowledges the possibility that new information in support of hypotheses about susceptible subpopulations could emerge, at which time significant new research efforts might be appropriate. Whether the recent information about mitochondrial dysfunction will be the foundation for a major new research direction remains to be seen. The committee’s comment on the untoward consequences of discouraging vaccination was offered as an elaboration of their concerns about the unsubstantiated vaccine-autism hypothesis and not as support for their recommendations about an appropriate research agenda for understanding autism.

The scientists and clinicians on this committee evaluated the then-available scientific data in an unbiased manner. They reached their conclusions based on where the evidence led them. This principle—making recommendations only if supported by the evidence—guides all studies that IOM undertakes. I reiterate that the committee most certainly did not urge caution about pursuing the vaccine-autism connection in order to avoid frightening the public away from immunizations. The IOM stands ready to re-examine this issue should sufficient and relevant evidence emerge.

I don’t believe that Dr. Healy’s statements are consistent with the way the IOM works in general or as described above. This isn’t just a statement that I disagree with her, I really don’t see how they are consistent, so I am sending her a link to this blog post and asking if she can elaborate.

This is vitally important. Dr. Healy’s statements, in my view, undermine the integrity of the IOM process, not just the 2004 report on autism and vaccines. They add to the growing mistrust of any group, be it academic, governmental or, in the case of the National Academies, independent, who research or analyze research on autism. The fact that they have been left for so long unchallenged and, in my opinion, unsupported, is very damaging to the autism community.