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Story Time With Darwin

24 Oct

When Autism’s False Prophets hit the shelves–heck even before–there was a lot of buzz in the online community. Lot’s of reviews were posted on blogs. There seemed to be a strong correlation between people who actually read the book and people who favorably reviewed the book. AFP was chosen for the Science Blogs Book Club.

There have been a lot of approaches to discussing Autism’s False Prophets online, but I don’t think I would have ever predicted this:

Darwin-AFP Introduction

Yep, someone (not just someone, and autistic adult) reading from Autism’s False Prophets.

I saw that video and thought, “AFP isn’t a really long book, but there’s no way that this guy can cover much of the book.”

I underestimated the will and stamina of Darwin. He has 59 videos up. He’s at least to chapter 8.

Here’s a “commercial” for the YouTube series. You gotta click on this one. It’s short, and made me laugh out loud.

Darwin-AFP commercial

Note: I’m having a little trouble embedding the YouTube videos. I hope to figure that out soon.

Vaccines on the Hill

25 Sep

With a hat-tip to Kim Stagliano at the Age of Autism blog. They got ahold of an email sent by Amy Pisani of Every Child by Two to legislators who were sending staffers to a briefing by Mark Blaxill and David Kirby on vaccines and autism.

Mr. Kirby promised to talk about, amongst other topics, Hannah Poling. That’s not what I would call a good briefing. A good briefing would be if the legislators asked HHS to talk to them about what the concession meant. Somehow, I think the two briefings would be significantly different. Then again, I suspect a briefing by the doctors who are studying that potential cause of developmental regression via mitochondrial dysfunction would also have a very different story to tell than Mr. Kirby. I strongly suspect that.

But, I digress, as I often do. You see, Every Child by Two thought that the legislators who were sending staff to the Kirby/Blaxill briefing should be informed that the information provided by that team was, well, not accepted by the mainstream.

The letter, respecfully written, respectfully submitted is quoted below. One reader of this blog asked Ms. Pisani for permission to reproduce it here. I am using the text from the AoA blog.

Why reproduce it here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

So, after much delay, here is something written much better than the ramblings I’ve put together:

Today you have been invited to attend a briefing to provide “updates on the recent autism-vaccines debate”. While I recognize that most of you will likely be dealing with other priorities and will not attend the Maloney briefing, I write to you this morning because I feel it is critical to clarify that there is no debate among the scientific community regarding vaccines and autism. Instead, the debate rages on in the media due to the efforts of those who wish to sidetrack critical research away from finding the true cause(s) of autism and treating children and their families struggling with this condition.

‘Last week Dr. Paul Offit’s new book “Autism’s False Prophets, Bad Science, Risky Medicine, and the Search for a Cure” was published by Columbia University Press. This book is a must read for all those concerned with children dealing with autism. The Philadelphia Inquirer writes that “Offit’s account, written in layman’s terms and with the literary skill of good storytellers, provides important insight into the fatal flaws of the key arguments of vaccine alarmists, including such well-known names as Robert F. Kennedy Jr., Sen. Joseph Lieberman (I., Conn.), and Sen. John Kerry (D., Mass.).” And the Wall Street Journal writes “Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness — usually in the toddler stage, before age 3 — have found themselves desperately searching for some way not to lose their children to autism’s closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.”

In 1999 I was pregnant with my first son just as the questions first arose regarding the MMR vaccine and subsequently the thimerosal in vaccines. After attending Congressman Burton’s hearings (quite pregnant I might add) I too became alarmed. Fortunately, as the Executive Director of Every Child By Two I had at my disposal the scientific research and advice of the world’s leading experts on vaccines and I was able to confidently vaccinate my son without fear of side effects. As of today, eleven studies now show that the MMR vaccine doesn’t cause autism, six have shown that thimerosal doesn’t cause autism, and three have shown thimerosal doesn’t cause neurological problems.

I urge you to read a few of the reviews of Dr. Offit’s book which are listed below and contact us if you wish to have a copy sent to you.

I also ask that you please visit our new website www.vaccinateyourbaby.org – this site was unveiled in August with our new spokeswoman Actress Amanda Peet specifically for parents who have questions about vaccine safety.

at the risk of making this an extremely long blog post, let me do what the Age of Autism did not do: list some of the reviews of the book.

A definitive analysis of a dangerous and unnecessary controversy that has put the lives of children at risk. Paul A. Offit shows how bad science can take hold of the public consciousness and lead to personal decisions that endanger the health of small children. Every parent who has doubts about the wisdom of vaccinating their kids should read this book. — Peter C. Doherty, Ph.D., St. Jude’s Children’s Research Hospital and Nobel Laureate in Medicine for fundamental contributions in Immunology

As a parent it is my job to protect my children. Hearing all the rumors about vaccine side effects made me question the right thing to do. This book makes it clear that vaccines save lives, and that they clearly do not cause autism. — Amy Pisani, mother

In his latest book Paul A. Offit unfolds the story of autism, infectious diseases, and immunization that has captivated our attention for the last decade. His lively account explores the intersection of science, special interests, and personal courage. It is provocative reading for anyone whose life has been touched by the challenge of autism spectrum disorders. — Susan K. Klein, MD, Ph.D., Case Western Reserve Hospital, and Rainbow Babies and Children’s Hospital, Case Medical Center

No one has been more vocal-or courageous-than Paul A. Offit in exposing the false and dangerous claims of the growing antivaccine movement. Offit’s latest book lays waste to the supposed link between autism and vaccination while showing how easily Americans have been bamboozled into compromising the health of their own children. Autism’s False Prophets is a must read for parents seeking to fully understand the risks and rewards of vaccination in our modern world. — David Oshinsky, winner of the Pulitzer Prize in History for Polio: An American Story

All good reviews. But, dang, a Nobel Laureate in Medicine. Not just medicine but immunology? Plus a Pulitzer prize winner? Begs the question of why the Age of Autism didn’t include them.

I am so glad that they offered Dr. Offit’s book to the legislators. I hope that the legislators, or their healthcare legislative assistants take them up on the offer. It’s a well written book, and fairly concise. It really explains how we (the autism communities) got here (into a big mess where vaccines are such a high profile subject–at least in the media) even though we shouldn’t be (because the science has been done repeatedly and shown no link).

Word back on the briefing is that about 75 people attended–a mix of staffers, parents, possibly even a member of the press. One representative was noted. Mr. Kirby gave the short version of his talk (the full version is quite long–take a look at his power point presentations sometime!). But, we can all rest assured that Mr. Kirby is there to save the vaccine program (I do hope that autism-one puts this briefing on their website. I need to hear that claim by Mr. Kirby with my own ears). Mr Blaxill took on the “sickest generation ever” theme, common to the vaccine rejectionists (a claim that has been addressed ably by epiwonk).

But, again, I digress. Let me bring you back to what I see as the one message I think you should take home from this post (repeated from above):

Why reproduce it [Ms. Pisani’s letter] here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

The Autism Hub stretches its wings some more

18 Sep

Mike from Action for Autism is heading down to London for the NAS International Autism Conference on behalf of the Hub tomorrow.

This continues the great work Steve started back in the winter of 2007/08 and carried through during the early part of this summer at USD.

I am utterly thrilled to see the Hub gaining such prominence amongst the scientific elite of American society and the group I feel is the most ‘ND’ friendly in the world – the UK’s National Autistic Society. It really does feel like the right people are listening to Hub members and so the right message is gaining prominence.

Mike’s presentation introduces the Hub to the NAS audience and goes through the history of how the web has traditionally been used in autism advocacy and how the Hub tries to redress the imbalance.

I have been tangentially involved in Mike’s preparations in my role as a designer but I would have loved to have been able to stand alongside Mike at the conference and showcase the Hub. One day.

The future of the Hub is very, very bright. All Hub members are involved in discussing how to take the Hub forward and what should be next. Dave and HJ are managing what is a very fluid process and I am really excited to be part of that team of dynamic and forward thinking individuals.

Go Hub!!

Really bad blogging by Sharyl Attkisson

9 Sep

As I noted before, My fax complaining that Ms. Attkisson missed the big story in the autism/vaccine discussion just about the same time she was posting on exactly that story (the Hornig MMR paper).

Ms Atkisson’s blog post is titled

New Study Disproves Vaccine/MMR/Autism Link

Wow. I didn’t expect to see that from Ms. Attkisson.

Below is the full extent of Ms. Attkisson’s contribution to the piece

There’s a new study in the Public Library of Science regarding vaccine measles and autism which purports to disprove a vaccine/MMR/autism link.

Also, researchers at ThoughtfulHouse wrote an opposing analysis:

She then posts the ThoughtfulHouse press release. No kidding, of the blog piece, 90% (an estimate on my part) of the words are written by someone else! And, not even the researchers involved.

Dang. Recently we have seen a lack of homework on the Dr. Offit conflict of interest story, and now this.

At least there was some effort put into the story on Dr. Offit.

What happened to the CBS I grew up with? I can’t see Walter Cronkite getting paid for “Richard Nixon has resigned in disgrace. Now, here is Mr. Nixon’s press release verbatim.”

Strategic Plan: when should I be concerned?

5 Sep

No, I’m not asking “when should I be concerned about the Strategic Plan”. Instead, I am taking parts of the Plan and posting them here. The full Plan is 34 pages long. Don’t let that slow you down! It really isn’t that long, and I found it a good read. But, it is hard to discuss the whole thing as a blog post.

Another point I see–there are six sections.  It may be tough to sit down at one time and write a response to all six.  If you think that may keep you from commenting, follow these posts and comment as you go.  It sounds like they would prefer you to write one single email, but I am all for anything that gives them more feedback–especially feedback that encourages using a strong scientific approach to selecting research projects.

With apologies to the people who wrote the Strategic Plan, I am going to only post the sections on “Research Opportunities” and “Short Term Objectives” and “Long Term Objectives”.  Read them and ask, “Is this how I want research dollars and research time spent?”.  If so, send them email and show support for the parts you like.  If not, email them and let them know your concerns.

With that intro, for the section, “When Should I be Concerned”, we have:

Research Opportunities

• ASD screening instruments and approaches for use in community settings to identify individuals who require diagnostic evaluation.

• Sensitive and efficient clinical diagnostic tools for diagnosing ASD in widely diverse populations, including underrepresented racial and ethnic groups, females, younger and older age groups.

• ASD measures that are easy to administer and that are sensitive to incremental changes in both core and associated ASD symptoms. Such measures can be used to help track the clinical course of individuals with ASD, monitor responses to interventions, and provide information about the broader autism phenotype.

• Detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes.

• ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention.

• Protocols for genetic testing in routine clinical practice in order to identify individuals at risk for ASD. Identification of individuals with genetic variations associated with ASD will facilitate intensive studies of ASD subpopulations with shared genetic risk factors to characterize common phenotypic and biological features.


Short-Term Objectives

• Develop, with existing tools, at least one efficient diagnostic instrument (e.g., briefer, less time intensive) that is valid in diverse populations for use in large-scale studies by 2011.

• Validate and improve the sensitivity and specificity of existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012.
o School aged children
o General population (vs. clinical population)

Long-Term Objectives

• Validate a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014.

• Develop five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015.

• Identify and develop measures to assess at least three continuous dimensions of ASD symptoms and severity that can be used to assess response to intervention for individuals with ASD across the lifespan by 2016.

• Effectively disseminate at least one valid and efficient diagnostic instrument (e.g., briefer, less time intensive) in general clinical practice by 2016

Again, ask yourself, “Is this how I want research dollars and research time spent?”. If so, send them email and show support for the parts you like. If not, email them and let them know your concerns.

No, really, email the IACC

4 Sep

Kev has already noted that the IACC has opened the Strategic Plan for comments and suggestion–a “Request for Information” or RFI.

This is something to not put off–a deadline to beat, not miss.

The Draft Strategic Plan is public. It’s long (34 pages), so you might think “I’ll get around to looking it over” and, well, it’s long enough that you may never read it through entirely and miss the deadline.

Here’s another tactic: Think about what is important to you. See if it’s in the strategic plan. If you liek what you see, say so. If you don’t like what you see (or you don’t see anything), say so.

Or, if that hurdle is too high (no judgements here. If this wasn’t keenly important to me, I might wait too long and miss this), just send the email with what you think the Strategic Plan should include. (add NOT-MH-08-021 to the subject line)

If you just want to say (for example), “Yo, NIH! You guys should stick to the peer reviewed methods that work” or, “Please stress adult issues“, or “I know you are getting pressure about vaccines, please don’t cave“, that works too. (As Ms. Clark has reminded me: add “NOT-MH-08-021” to the subject line).

If you are looking for more inspiration (and something more formal), here is a draft that someone I know wrote as an intro. Consider it a template to work in forming your own message.

Please stay with the scientific method in evaluating specific parts of the Strategic Plan and its implementation. This is one of the strengths of the NIH and NIMH and should be followed in autism research.

This is especially true when it comes to the subject of vaccines. The Institute of Medicine in their report on vaccines and autism rejected the theories that vaccines cause autism and further stated, “the committee recommends that available funding for autism research be channeled to the most promising areas.” Truly, we need to insure that limited money, time and researcher resources be applied to the most promising areas. The vaccine/autism theory does not meet that standard.

The Strategic Plan allows for updates to respond to new research. The current plan to monitor the literature in case new, relevant research comes forward indicating that the autism/vaccine question should be pursued. This is the appropriate approach.

I fully realize how easy it is to put this off. I’ve been meaning to write this blog post for a week now. It took this post with the ASAN announcement about the RFI to get me to move.

Send your thoughts in an email to iacc@mail.nih.gov. The deadline is Sept. 30th. But, why wait?

[edit: added comments about NOT-MH-08-021 in the subject line.]

Go Danish!

15 Aug

If you search around the web, you can find people suggesting other vaccine schedules than that used in the “overly aggressive” United States.

One you will find, promoted by the autism/vaccine advocacy group Generation Rescue doesn’t include any coverage whatsoever for Measles Mumps or Rubella. That is scary. Just plain scary.

They have others, though. One is “Go Danish”, with this little blurb:

Comment: Denmark is a first world country based in Western Europe. Their schedule appears far more reasonable than ours. They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

They give the vaccine schedule as of December 2006. Hmmm, makes you wonder what it looks like now, doesn’t it? We’ll get to that.

Well, let’s look at the “recommended” “alternate” schedule based on the 2006 Danish schedule:

DTaP at 3, 5 and 12 months
Hib at 3, 5 and 12 months
IPV at 3, 5 and 12 months, plus 5 years
MMR at 15 months and 12 years

And, this supposedly leads to a lower autism prevalence. Take a look again–that means that giving 5 vaccines at once, three times in the first year of life doesn’t cause a high autism rate. It also means that MMR at 15 months does not cause a high autism rate.

With this on their website as a something to “consider”, shouldn’t they consider what this tells us? Again, assuming that the autism prevalence in Denmark is low, doesn’t this tell us that vaccinations given in combination, early in life, don’t cause autism “epidemics”? Isn’t it pretty clear that the MMR doesn’t cause “autism epidemics”?

The current Danish schedule is now somewhat modified from the 2006 one noted at the Generation Rescue website. They’ve added the pneumococcal conjugate vaccine (PCV) at 3, 5 and 12 months. That’s 6 vaccines at once 3 times in the first year of life.

That sounds like a lot of jabs for those little Danish kids…except that they use combination vaccines. Not just DTaP, but DTaPHibIPV. Wow, a five part combination vaccine. I don’t think this is what Generation Rescue had in mind when they suggested “Go Danish”.

They have also added the HPV (Gardasil) vaccine at age 12, but I really think the discussions of that vaccine have nothing to do with autism and just paint factions of the autism community as anti-vaccine, so I prefer to stay out of that discussion.

The combination vaccine (which I assume is fairly new) and the addition of the PCV vaccine will give groups like Generation Rescue a talking point if/when the autism counts in Denmark increase to something similar to the rest of the world.

But, let’s leave where we started, with the words of Generation Rescue, speaking about Denmark:

They have also been reported to have a much lower rate of autism than the U.S. Do they know something we don’t?

Apparently, the Danish know that multiple vaccines don’t cause autism. If we believe Generation Rescue, it looks like Denmark has the data to show it.

Kirby, wrong on the radio

14 Aug

First there was the world tour (well, to London). Then there was the national tour (well, around a day’s drive from NYC, or thereabouts). Now, we had David Kirby, live by phone on the radio!

The talk is broken into two hours. Mr. Kirby starts at about 50 minutes into the first hour. And, he doesn’t waste time. He instantly moves into getting it wrong.

First he says that anyone who thinks that the science is on the side of saying there is no link isn’t keeping up with the science. This is because (un-supported assertion coming up) “new stuff comes up virtually daily” coming in from major universities around the world.

Well, yes, new stuff is coming in daily from major universities around the world. There’s all sorts of stuff coming in on a multitude of areas, so, I guess he’s right. But, there isn’t stuff coming in daily to support the vaccine/autism concept. Take the last 5 years. With stuff coming in virtually daily, there should be over 1,000 “stuffs” (nice that he didn’t say “research” or “papers” or “results”, but “stuff”). Did anyone else listen to the Autism Omnibus? Did you notice over 1,000 stuffs being presented, or did you, like me, hear a few studies that may or may not support the idea?

OK, that isn’t a biggie. He moves on quickly into…come on we all can all guess….that’s right! Mitochondria! And, right off the bat, he gets it wrong.

He brings up that just yesterday from the UMDF (good group from what I can see) about the research from the Newcastle and Virginia Polytechnic Institute that Kev and Kristina noted recently.

Mr. Kirby mentions that the study noted that 1 in 200 have a “DNA mutation that may confer mitochondrial dysfunction” and “..this is exactly what Hannah Poling had when she got 9 vaccines in one day.”

OK. Now the facts. The study indicates a number of specific, measurable mtDNA mutations that might lead to mitochondrial disorders. Only one mtDNA mutation has yet been found with Hannah Poling–and this is not one of those studied in the recent paper. A major piece of David Kirby’s arguments so far has been that the mtDNA mutation that Hannah Poling and her mother have is benign. The dysfunction results, according to David Kirby’s interpretation of his source, is in Hannah Poling’s nuclear DNA.

As an aside, Mr. Kirby’s stance has been that the Hannah Poling type of dysfunction is inherited from the father (an apparent misinterpretation of it’s own). I bring this up to point out even more–David Kirby knows that there are major differences between the recent study and the kids in the upcoming 30-kid study that describes children with conditions similar to Hannah Poling (with the exception of any vaccine trigger, but that gets glossed over by Mr. Kirby too).

It is worth reading this comment yesterday from Prometheus.

One thing he notes is that a number of the people identified in this study had mtDNA mutations linked to Leber Hereditary Optic Neuropathy (LHON). You don’t have to go farther than the name to realize that an “optic neuropathy” isn’t “exactly what Hannah Poling had…”

Do I dare listen to hour two?

When jobsworth's attack

10 Aug

Jobsworth: UK Slang.

It’s been a rough old time to be autistic or the parent of an autistic child just lately. You could get voted out of your classroom, or you could get thrown out of a restaurant, or for the extra special prize you could be one of some jackass DJ’s 99% of autistic kids who are faking it.

Now, not wanting to be left out, Quantas are having a go at being as obstructive and generally stupid as they possibly can to autistic people.

Three Waikato families are facing a bill of $33,000 after three dogs being brought to New Zealand to help autistic patients were banned from a Qantas flight in Los Angeles.

The families had spent two years raising funds to bring the dogs to New Zealand.

Sonya Ewens, whose six-year-old son Sloan got one of the dogs to help with his autism, said they were “devastated”, the Waikato Times reported today.

She said they were still raising the last $6000 for the original fare and the thought of another two years fundraising “is really too much.”

$33k of NZ dollars is US$23,248, CAN$24,809, UK£12,105 or €15,478. Whatever way you cut it, its a lot of money.

What is it about autism that seems to bring out the worst in people? Time and again we hear stories of people being downright cruel pretty much for no good reason. And then when the story breaks they all start a tasteless game of pass the buck. Quantas blame American Airlines blah blah blah….none of which is going to help these kids get their service dogs.

Quantas – be decent. Its money. Waive it.

Misplaced anger, or, I'd be pretty annoyed with the PSC if I were a petitioner

3 Aug

Sharyl Attkisson has recently “discovered” what those of us who have been watching the Autism Omnibus closely have known for months: Hannah Poling is not the first person with autism or autistic symptoms who has had been compensated* in vaccine court (as evidenced by Neurodiversity.com and Arthur Allen)

(*note that Ms. Poling’s case is still on going and she hasn’t been “compensated” yet.)

That said, one of the comments on Ms. Attkisson’s blog struck me. I’ll pick a bit out here, from Tim Kasemodel:

Our Government has been good at sweeping things under the rug – but the rug is no longer big enough, and great reporters such as Sharyl Attkisson are beginning to look there.

Ah, let’s see. I’ll point out, though I can’t prove, that I found other cases in the vaccine court’s history involving autism/autistic symptoms within days of David Kirby breaking the Hannah Poling story. It wasn’t hard–the government has cleverly swept these cases “under the rug” by putting them on their server in plain sight. The Chief Special Master made statements in the press about previous cases. (I need to find a good link for that, I know). My guess is that Ms. Seidel found more by doing those clever searches that got her subpoenaed (since a “mere housewife” wouldn’t be able to do computer searches, or some such nonsense).

So, we’ve established (I hope) that these were not hidden or “swept under the rug.” Given that, would you like to guess my reaction on finding this? Anger. Annoyance. Disappointment.

Yep. I was pretty pissed off. At whom? The petitioner’s steering committee (PSC).

I bet that raises some eyebrows and has a few people thinking I’m making stuff up, but it’s the cold hard truth. It bothered me. Did no one in the vast number of lawyers preparing the petitioner’s case ever do a search through the vaccine court’s cases for the keywords “autism” or “autistic”?

It’s no surprise that I think the PSC doesn’t have a case. But, I think that since the Omnibus wasn’t dismissed, the petitioner’s deserve their day in court with good representation. Missing such a simple thing as the existance of related cases doesn’t make me feel like the PSC is as good as it could be.

Hence the title–I think he anger is misplaced. The government didn’t sweep this under the rug. The PSC (petitioner’s steering committee), the autism/vaccine “advocates”, journalists (or not? I’m still trying to work that one out) like David Kirby just dropped the ball.

The fact that Sharyl Attkisson can pass this off as “news” when Arthur Allen and Neurodiversity.com have covered the idea just goes to show that the people promoting the autism/vaccine link keep dropping the ball.

As AutismNewsBeat recently noted, CBS news has discovered that people get paid for work. Actually, they seem to be demonstrating that people get paid for other people’s work. Seriously, are Arthur Allen and Kathleen Seidel getting royalty checks on this story?

Sullivan
Nikolai Ivanovich Lobachevsky Endowed Chair
LBRB School of Journalism

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