Who deserves a seat on the IACC?

29 Apr

There is a lot of lobbying for a seat on the Interagency Autism Coordinating Committee. This committee’s job is to plan and coordinate research efforts in autism amongst the various U.S. governmental agencies involved.

Membership in the IACC is split between government employees representing these agencies and public members. It is the public membership that draws attention. Many groups would like a seat at that table. Generation Rescue has lobbied in the past for a seat one the IACC or, better yet, on an “autism advisory board” which would oversee even the IACC.

Katie Wright, board member of SafeMinds, the National Autism Association and Generation Rescue, has been rather vocal on the subject on their group’s blog. She has voiced an opinion that the public slots should go to people who represent groups with large constituencies. She was highly critical of one IACC parent member, claiming (falsely) that this parent was only on the IACC due to connections with Tom Insel (the IACC chair). While she has acknowledged her error, Ms. Write remained of the opinion that a mere parent does not belong on the IACC.

Given that the IACC is scheduled to announce new members tomorrow, I thought I would look at the membership requirements. The IACC membership is discussed in the Combating Autism Act, as follows:

(c) Membership-

(1) IN GENERAL- The Committee shall be composed of–

(A) the Director of the Centers for Disease Control and Prevention;

(B) the Director of the National Institutes of Health, and the Directors of such national research institutes of the National Institutes of Health as the Secretary determines appropriate;

(C) the heads of such other agencies as the Secretary determines appropriate;

(D) representatives of other Federal Governmental agencies that serve individuals with autism spectrum disorder such as the Department of Education; and

(E) the additional members appointed under paragraph (2).

(2) ADDITIONAL MEMBERS- Not fewer than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater, shall be composed of non-Federal public members to be appointed by the Secretary, of which–

(A) at least one such member shall be an individual with a diagnosis of autism spectrum disorder;

(B) at least one such member shall be a parent or legal guardian of an individual with an autism spectrum disorder; and

(C) at least one such member shall be a representative of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.

There is no mention that public members must all represent a substantial constituency at all.

My own opinion, for whatever that may be worth, is this. Public members on the IACC should

(a) represent the diverse viewpoints of the autism communities
(b) be willing to put in work on the committee
and
(c) be able to work as a part of a team on the committee.

Somehow, when groups like SafeMinds, Generation Rescue, the National Autism Association and the Autism Research Institute belittle IACC members with blog posts depicting them as “baby eaters“, I doubt whether they meet criteria in [c]. But, hey, that’s just my opinion. The opinion of someone who needs the IACC to work.

That said, is a constituency needed on a governmental committee? I would argue not. Perhaps the most well known public member of a US governmental committee was the late Prof. Richard Feynman. He served on the committee to find the cause of the destruction of the space shuttle Challenger. Prof. Feynman didn’t represent any constituency. He wasn’t a part of the space program. He was just a guy who got things done.

But, if we are going to talk about which big groups deserve to be on the IACC, we should recall that the IACC exists to manage a research plan. Groups that are involved in research should have a seat at the table.

You may recall that last year I discussed Autism research funding: who is paying and how much?. The IACC had put together a document on nationwide (public and private) research funding into autism. It turns out that the largest private group, in dollars, funding autism research is the Simons Foundation. They even outspend Autism Speaks, whom many would assume would be the largest autism organization. Heck, the Simons Foundation outspends the CDC.

Autism Funding by Agency

Another autism organization that doesn’t get heard much on the blogs is the Marks Foundation. Last year they committed $29M to start an autism center for all ages at Boston General Hospital.

It will be interesting to see who the new members are on the IACC. The world is made up of a lot more than just the vaccine-causation groups. Groups who are not as big as they would like us to think. The vaccine-causation groups are already well represented by Ms. Lyn Redwood. I’ve never heard anyone say that she doesn’t represent their ideas ably.

As noted above, there is one parent on the IACC who is not affiliated with any organization. I find this wholly appropriate and would not be surprised nor put off should the IACC appoint a second unaffiliated person–be they autistic or parent. Frankly, another autistic would seem appropriate. I thought Wolf Dunaway was very impressive when he served on a subcommittee.

Tomorrow morning new members will be welcomed. They have my gratitude for being willing to serve in what is an unnecessarily contentious position.

Just how big is the National Autism Association anyway?

29 Apr

The Interagency Autism Coordinating Committee (IACC) is meeting tomorrow. On the agenda is “Welcome and Introductions of IACC Members”.

It is no secret that many groups have wanted a seat at the IACC table. Autism Speaks was previously represented by Alison Singer, but she left Autism Speaks to form her own organization, the Autism Science Foundation. The vaccine-causation groups have been very interested in increasing their presence on the IACC. Currently, they are represented by Lyn Redwood of SafeMinds. But, Generation Rescue and the National Autism Association and, I assume, TACA would like to have membership on the Committee.

In a recent blog piece discussing the IACC, Katie Wright, board member for the National Autism Association and Generation Rescue, pointed out the broad membership base of the NAA and TACA. Further, she stresses the importance of a “significant public constituency”

The National Autism Association, representing 12,000 dues paying parents and TACA representing 17,000 parents implored Dr. Collins to assign these organizations seats on IACC. Of the 19 members on the committee, only 3, Lyn Redwood, Lee Grossman and Stephen Shore represent a significant public constituency.

To me, the message seemed clear. The NAA or TACA should be on the IACC because they are so big. They represent such a large base of support.

I’ve been reading about how these groups represent “thousands” or “tens of thousands” of families for some time. The statements are always unsupported, so I tend to give them little weight. But when I read the above statemen, I spotted the phrase “dues paying”. To me, that reads as “a fact I can check”.

So I pulled the 990 forms for the NAA. 990 forms are the tax forms that charitable organizations file in the US, and they are made public, albeit after a couple of years.

The 2008 form 990 shows under “membership dues” that the NAA took in $17,640.

Membership dues to the NAA is $35/year for an individual, $60 for a family. This was the same in 2008.

Taking the $35 value, that gives a membership for the NAA of 504 (an upper bound estimate). Very respectable. Not 12,000, though. Perhaps they’ve had a major membership boom since 2008. Perhaps I misunderstood something. But, this fact check would suggest that the 12,000 claim for the NAA’s membership is, perhaps, somewhat high.

Maybe 2008 was a bad year for the NAA? Checking the other Form 990’s for the NAA gives the following amounts for dues collected:

2006: $14,950
2007: $22,592
2008: $17,640

Hmmm. Looks like they may have peaked in 2007.

Perhaps there are a number of dues paying members in the NAA chapter. Guidestar shows a number of these NAA chapters. The few I checked (like the Northeast Ohio chapter) report no dues.

I’m open to being corrected, with proof. But, for now, it looks to this observer that the National Autism Association membership is much less than the 12,000 claimed.

Whether the size is important, that is a discussion for another post.

Review of Frontline’s The Vaccine War

29 Apr

The Vaccine War has aired. Judging by the responses, one might consider it a success. Pro vaccine groups like Every Child By Two were telling people to watch it. The Autism Science Foundation “highly recommends” watching it. On the other side, the organizations represented by the Age of Autism blog (Generation Rescue, the National Autism Association, SafeMinds, the Autism Research Institute and TACA) are very upset. Jenny McCarthy has gone to the Huffington Post with her side of the story, as has Dr. Jay Gordon, whose entire interview was cut from the program.


An unofficial (and incomplete) transcript is here.

That all said, I both appreciated the program and had my fears realized. In this case, my fears were that people would be given a platform to spread misinformation. And it happened. Jenny McCarthy and others made statements that were, in my view, misinformation. But, I appreciated the fact that Frontline took the time to counter much of the misinformation with actual experts discussing real science.

Frontline describes the show as:

In The Vaccine War, 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.

I think the show accomplished this. There was some cost in terms of allowing Generation Rescue’s misinformation message in TV once again. But, this time, this time they are the problem.

If you watch the introductory 2 minutes of this video, you will get some idea of how the show is presented

Parents, both pro vaccine and not, activists, public health workers and researchers like Dr. Offit telling various sides of the story, with the narrator tying it together.

Narrator: Tonight on Frontline: They’re hailed as medicine’s greatest triumph: conquering smallpox, diphtheria, polio and more. But today, some Americans question if all those vaccines are worth the risk.

The show is in four segments. The titles for these segments should, again, give you an idea of the tone of the show.

1. A visit to Ashland, Oregon. In some American communities like this one, parents are hesitating to vaccinate their children, despite their doctor’s advice.

2. Eroding faith in vaccines. Skeptics target Paul Offit, inventor of the rotavirus vaccine. And many parents are wary of vaccines because they no longer see the diseases.

3. Fearing vaccine risks, especially autism.. Vaccine skeptics like celebrity Jenny McCarthy have organized a community of parents concerned about a vaccine-autism link.

4. The science that launched the movement. A British doctors ’98 study theorized that the measles vaccine causes autism. Soon vaccine critics began questioning other additives in vaccines.

5. What epidemiological studies reveal. No link is found between autism and the MMR shot or thimerosal. And the British doctor’s ’98 study is discredited, but critics demand more studies.

6. Vaccines, what’s at stake. The debate goes beyond the medical risks-benefits: it involves parents’ rights to make choices v. the needs of the community.

In the first segment, they interview a pro-vaccine mother in Ashland. She notes that if there is an outbreak, the response may get contentious. It may get ugly.

Beyond the direct human cost, one of my worries: how much blowback will there be to the autism communities? How much blame will be applied and what will it cost?

As part of the introduction, The Vaccine War discusses the story of Desiree Jennings. She was a Washington Redskins cheerleader who claimed dystonia as an adverse reaction to her vaccine. Her story broke out not through the TV news show that covered her story, but through YouTube. Jenny McCarthy is quoted about how Generation Rescue took Ms. Jennings to see Dr. Rashid Buttar and how chelation and HBOT cured her.

What makes the Desiree Jennings story even more interesting is the possibility that the vaccine-injury/dystonia story may not be real. As noted on LeftBrainRightBrain, Ms. Jennings was later followed by cameras from a TV program and shown to be driving and walking normally.

The possibility that Generation Rescue is using the story even though it may not be true was probed by Frontline. Here is a part of an interview from Frontline with one of Generation Rescue’s founders:

[Frontline]Talk about the viral spread of an image over the Internet, like [Redskins cheerleader] Desiree Jennings’ flu shot story, for example.

It’s remarkably powerful what an image or an idea can do in today’s day and age, and for a group of parents who feel completely outmatched — because think for a moment about who our enemy is; our enemies are the largest pharmaceutical companies on the planet, making billions of dollars in net profit a year — you’d think that we could never compete with that. But an idea can transmit itself powerfully and very cheaply for millions to see.

So in the case of Desiree, here you have an image of this beautiful woman who’s been severely disabled that literally tens of millions of people view overnight, and imagine the chilling effect that has on a flu vaccine that she attributes as the cause of her condition. It’s remarkably powerful.

[Frontline] Does it matter whether it’s true or not?

Truth always bears out in the end, so I’m a firm believer in that. Are there moments in time where truth is exaggerated or expanded? Absolutely. But truth bears out in the end. …

Perhaps I missed it, but it appears to this reader that Frontline’s question was completely dodged. Does it matter whether the Desiree Jennings story is true or not? I think so. But what seems important to Generation Rescue is not the truth of the story, but the fact that it is a gripping narrative that sells their message.

The Vaccine War has a rather large cast, if I may call them that. Parents both pro and anti vaccine, a writer from Ashland who is anti-vaccine, Paul Offit, bioethicist (and polio survivor) Arthur Caplan, Jenny McCarthy, Anthony S. Fauci (immunologist from NIAID), Cynthia Cristofani (pediatric intensivist), Alvaro and Myrian Fontan (a family who almost lost their daughter to whooping cough) and J.B. Handley, Barbara Loe Fisher–plus more.

In some ways, “The Vaccine War” takes the same approach that Dr. Offit uses in books like “Autism’s False Prophets”. Let the skeptics make their points, ask their questions, then respond. Sometimes this is quite jarring.It is tough to sit back and listen to someone spread information and wait for the response.

The Vaccine War is well researched. Even though people like Jenny McCarthy got some air time for their ideas, they are quite upset about the Frontline episode.

Perhaps I am the only one who will find this ironic. In response to this episode, one which discusses how groups like Generation Rescue use social networking on the internet to get their message out, they are taking to social networking. Twitter, blogging…

As noted above Jenny McCarthy and Dr. Jay Gordon have taken to the Huffington Post to respond to the show. the Age of Autism is being very critical. They are attempting to “poll mob” the Frontline website. (humorous aside–they haven’t figured out that the survey doesn’t record their answers. It only shows you how your responses compare to the actual survey.)

If you have friends, family who are wondering about the vaccine/autism “controversy”, this is a good show to refer them to. It gives both sides. It allows people like Jenny McCarthy to give her viewpoint–and it gives the response.

Watch Frontline’s Vaccine War online

28 Apr

I’ve only been able to watch the first few minutes so far, but I wanted to make this available.

(I’ve emailed asking if there is a captioned version)

If you want to read–written interviews:

Jenny McCarthy
She’s an actress, celebrity and activist. Her son was diagnosed with autism following a series of vaccinations, and she’s helped organize a movement of parents concerned about a vaccine-autism link.

Cynthia Cristofani, M.D.
A pediatric intensivist who takes care of children who need critical care, Cristofani decided to start documenting the rare cases of vaccine-preventable illness that turned up in her Portland, Oregon ICU.

Anthony S. Fauci, M.D.
He is an immunologist and the director of the National Institute of Allergy and Infectious Diseases [NIAID].

Alvaro and Myrian Fontan
They watched in anguish as their 40 day-old baby Vanessa — not yet old enough for the pertussis vaccination — fought for her life.

J.B. Handley
A businessman whose son was diagnosed with autism, Handley co-founded with his wife the autism advocacy site Generation Rescue.

Paul Offit, M.D.
Co-developer of a vaccine for rotavirus, the leading cause of severe diarrhea in children, Offit is chief of the infectious diseases division at The Children’s Hospital of Philadelphia.

Frontline Vaccine War episode on in the US tonight

27 Apr

I’ve written about the upcoming Frontline episode, The Vaccine War, a few times already.

Reviews are in the press already. It looks to be an interesting show. Jenny McCarthy, Generation Rescue, the (self-named) National Vaccine Information Center will get some air time. But, they are there to demonstrate the current problem. It is not a program about how they are fighting the good fight.

That said, don’t expect a full body slam. Don’t expect a Respectfully Insolent takedown of those who oppose vaccines.

Because of that, I expect some groups to claim some level of victory from tonight’s show. I expect to hear how they got their message out to a few more families. How they are that much closer to instilling fear and “bringing the vaccine program to its knees”.

The fact of the matter is this: So far, the U.S. hasn’t seen the large outbreaks of diseases like Measles. But if there are in the future, the “autism community” and, specifically, groups like Generation Rescue will carry some blame. Future editions of shows like “Frontline” will be harsh.

One review in on the Frontline episode is at Entertainment Weekly: Should kids be vaccinated? ‘Frontline’ and science say ‘yes’; Jenny McCarthy and a lot of selfish Gen X’ers say ‘no’.

Intro paragraph:

Tonight on Frontline, “The Vaccine War” presents both sides of the controversy over whether young children should be vaccinated for diseases such as measles and polio, and in a rare display of TV-news common sense and independence, one side is shown to be — sorry — wrong. Frontline‘s documentary will, I hope, leave any sensible viewer feeling that you’d have be deluded or selfish not to have your kids vaccinated.

conclusion:

What makes this Frontline — “The Vaccine War” is written, produced, and directed by Jon Palfreman — so compelling is seeing the smugness of the vaccine-deniers contrasted with the facts and figures of the historical record and current studies being down about the efficacy of things like the MMR triple shot.

Other reviews are not so harsh on the vaccine rejectionists.

But, this is a wake-up call for the army working to “bring the US vaccine program to its knees”. If successful, don’t expect to avoid blame.

It is a wake-up call. I expect they will hit the snooze alarm.

Time to vote–help a special ed teacher improve her classroom

27 Apr

Pepsi has a charitable giving campaign where you vote for the proposals that get funded. I wrote about it recently supporting one idea: a $5,000 project to provide iPod touch’s and Proloquo2Go software for a classroom.

I have no connection with the project, I just saw the proposal and said, “Dang, that’s a good idea”.

They need to be in the top 10 by the end of the month. They are 11th right now. The end of the month is a few days away.

Now would be a good time to vote. You can vote every day, so if you’ve already voted, vote again. If you vote today, vote tomorrow.

Here is a widget they provide to help you vote:

http://www.refresheverything.com/widget/?i=186a6f7a-724e-102d-a17f-0019b9b9e205&w=300&mc=333333&mt=This%20looks%20live%20a%20very%20worthwhile%20project%20and%20they%20are%20so%20close.%20%20Vote%21

Here’s an overview of the proposed project:

Goals

* To start a 10 unit iPod Touch Communication Lab.
* To increase the communication skills of my students with Autism.

Overview

An iPod Touch Communication Lab will provide the technology to change the lives of 25 amazing students with Autism. These students are currently challenged to communicate with others and understand the world around them. An iPod Touch Communication Lab will build functional communication skills. The Proloquo2Go application has over 7,000 symbols and text to speech capabilities, turning an iTouch into a communication device. The students will learn to use this device and it will:

Help them effectively express themselves across many different learning environments. (classroom, cafeteria, playground)

Provide visual cues to help the students successfully transition throughout the school day.

Foster independence through instruction on how to access functional information on the web. (directions, schedules, phone numbers)

Be a tool used to promote relationships between students with Autism and their typical peers.

Let’s Talk Autism – next live Prime Ministerial Debate

26 Apr

I just received this message from Carole Rutherford at Autism in Mind and ask all UK readers to join us in trying to get autism discussed at the final televised debate between the party leaders.

The final Prime Ministerial debate takes place on Thursday night. The final debate is about the economy. It is estimated that there are at least half a million children and adults who have a diagnosis of autism. There are many more who have the condition without the diagnosis. There could be as many as 6 million families in the UK alone who are living with autism.

Autism-In-Mind and Asperger Syndrome Action by Parents want the leaders to talk about autism on Thursday night and we need your help now. We want you to submit the following question onto the BBC ‘Election Question’ form. The question is wrapped around the economy and how the money that is being spent on autism every year is being spent. It is important that we all ask the same question. We want 1000,s of people to ask this question by Thursday Night and if we can achieve this then maybe someone will listen to us and will talk about autism.

Question to submit to the BBC

A recent study by researchers at King’s College London estimated that autism costs the UK economy around £28.2 billion per year, and yet thousands of autistic/Asperger syndrome children and adults do not meet the criteria for any provision or services. Autism/Asperger syndrome requires services from the cradle to the grave. The only money attached to the newly published Autism Strategy will be half a million pounds for increasing awareness and understanding of autism among frontline professionals with nothing for service provision.

In the first debate there seemed to be recognition from all three parties that there is a huge social care agenda to be addressed in the future, but will it include autistic/Asperger syndrome and disabled people and what guarantee can you give that it will include them? How are you going to make sure that EVERY autistic child and adult is not left until crisis point before they are given the provision that they need? Many of us would like to know how much of the £28.2 billion is being spent on crisis management.<?b>

Here is where you post the question – you do have to give your name and where you live. You do not have to add a telephone number if you do not want to. If you do want to add this number 07960875526 this phone will be deactivated after Thursday night.

http://news.bbc.co.uk/1/hi/uk_politics/election_2010/8589502.stm

Here are some facts and figures produced about Autism last year by the National Audit Office – This might help you to understand how important it is for the Leaders to ‘Talk about Autism’ on Thursday night.
http://www.youtube.com/watch?v=eEKMsO9t0pU

Tags: , ,

Mum rejects autistic daughter

26 Apr

A terribly sad story from Romania involving a teen autistic girl adopted at a young age and now seemingly rejected by the adopting family.

Mihaela Popa adopted the girl aged 18 months in 1999 but claims doctors failed to tell her she was suffering from the developmental disability. She has now asked a court to overturn the adoption so she can get rid of the teenager.

This poor young girl has also been abandoned by her own parents at birth and now faces a massively uncertain future.

Of course the reversal must happen – who would want that poor girl to be saddled with a parent who didn’t want her? – but this adopting ‘parent’ should not, in my opinion, escape this sordid episode without some form of censure. At the absolute least, one would hope she would be banned from ever being allowed to adopt again.

Some people simply don’t deserve to be parents.

Plan and Prepare: Transition to Adulthood Conference

22 Apr

I’m not a big fan of the Autism Society of America. Their position on the vaccine issue is weak, to be kind. Their webpage on that issue is out of date and not really helpful. Their discussion of mercury is, well, ill-informed.

That said, I saw this announcement for a conference by the Autism Society-Los Angeles chapter: Plan and Prepare: Transition to
Adulthood Conference.

Topics include navigating services, legal considerations, self advocacy and work options.

“Touch” the lives of autistic students

22 Apr

Pepsi has an interesting promotion ongoing. They have taken the money they would have spent on commercials during the Superbowl, and instead they are spending it on charity. They determine the charities by votes.

One idea that stands out is:

“Touch” the lives of my students with Autism.

The idea is to use the money from Pepsi (should they win) to purchase iPod touch’s and install Proloquo2Go software on them. Proloquo2Go is an Augmentative and Alternative Communication (AAC) program for the touch.

I first heard about this program on Change.Org, in a post by Dora Raymaker, New iPhone and iTouch AAC Solution. I’ve seen it and it looks very good.

Here is the proposal from Jennifer Luckart, a special ed teacher trying to obtain the Pepsi grant money:

Goals

* To start a 10 unit iPod Touch Communication Lab.
* To increase the communication skills of my students with Autism.

Overview

An iPod Touch Communication Lab will provide the technology to change the lives of 25 amazing students with Autism. These students are currently challenged to communicate with others and understand the world around them. An iPod Touch Communication Lab will build functional communication skills. The Proloquo2Go application has over 7,000 symbols and text to speech capabilities, turning an iTouch into a communication device. The students will learn to use this device and it will:

Help them effectively express themselves across many different learning environments. (classroom, cafeteria, playground)

Provide visual cues to help the students successfully transition throughout the school day.

Foster independence through instruction on how to access functional information on the web. (directions, schedules, phone numbers)

Be a tool used to promote relationships between students with Autism and their typical peers.

This idea is currently ranked 16th. The top 10 ideas get funded in this category.

If you are curious about this software, here is a YouTube video on Proloquo2Go.

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