Archive | Age of Autism RSS feed for this section

Autism community show their compassion

6 Jan

I’ve refrained from blogging about the death of Jett Travolta because I don’t really know what to say about it directly. I’ve mentioned the lad before in passing and his dad in terms of the suggestion that Jett was autistic and his mum and dad were refusing to recognise his autism because their scientologist beliefs wouldn’t let them. I definitely have opinions about the life and death of Jett Travolta but, hey guess what? Maybe right now isn’t the time for me to air them?

In fact, whilst I think about it, maybe this isn’t the time for any autism group to air them when those opinions are simply carefully veiled hit-pieces designed solely to try and draw attention to ones own ideas about autism causation. Distasteful isn’t the word when you read something like the below from Dan Olmsted:

We don’t know why Jett Travolta died, but we do know that our environment is making more and more of our kids sick while the medical community and public health officials deliberately avoid investigating “the equivalent of a metallic chemical,” whether it’s found in commercial products, vaccines or carpets with spilled mercury. Our kids are paying the price.

which appeared at the end of a piece he wrote on AoA trying to link Kawasaki disease (which the Travolta’s say Jett had), acrodynia (a form of mercury poisoning) and autism. The man has absolutely no shame or decency.

But even Olmsted’s lack of social skill pales into insignificance when compared to the group Autism United who apparently tried the most appallingly bad taste PR stunt to promulgate their message.

This is a difficult time for John and Kelly, and our prayers are with them,” said Ain. “But this could be an opportunity for them to use their son’s death and their celebrity to help thousands of parents, who are caring for sick youngsters.

Yeah, because if one of my kids had literally _just_ died the first thing I’d feel like doing is jumping in front of a TV camera and ‘using my childs death’.

Jesus Christ. Gave the family a break yeah? Whatever his beliefs were and whatever my opinions about them are, I hope I can see the truth about how John Travolta felt about his son.

If there’s anyone out there who sees that and can’t see that the man loved his boy then there’s something wrong with you. If there’s anyone out there who feels that this is a good time to start *using* Jett Travolta’s death to further their own crackpot ideas, there’s something wrong with you.

Age of Autism's reporter of the year 2008

3 Jan

Age of Autism’s reporter of the year for 2008, David Kirby, made something of an error yesterday. On the Huffington Post, the following headline appeared:

Obama Transition Team: “Recovery from autism is neither possible nor desirable”

You see, David was alluding to the fact that Kristina Chew and Dora Raymaker head been appointed by Change.org to be their autism bloggers. Trouble is that somehow he got the idea in his head that Change.org was actually Change.gov’s website.

Change.org is actually a social action networking site run by people who took the time to sift through the applications they received and interview those they shortlisted. They were very, very knowledgeable about the split in the autism community and decided that rather than rely on the sort of scare-mongering and factless blogging that permeates the vaxosphere they would get their facts about autism from a professor with an autistic child and (gasp!) an autistic person themselves.

Lets be clear about the size of David’s error here (in case the post is now gone I have a screenie for you to grab) davidkirbyoopsie

David has pretty much just accused the Obama transition team – without doing the most basic of fact checking – of wanting to leave autistic children to ‘a nightmare without end’.

A lot of David’s post is factless twaddle and made me quite angry to read. He (like everyone else on his side of the autism divide) states there are thousands of recovered autistic kids? Where? Where are the case studies? Certainly not in PubMed.

David claims Kristina doesn’t speak for the ‘countless thousands’ of parents he knows who think vaccines injured their kids. So? AoA don’t speak for the ‘countless thousands’ if not millions of parents that exist all over the world who don’t think vaccines cause their child’s autism.

I have a very strong suspicion in fact that David didn’t actually visit the website of Change.org. If he had he would’ve seen instantly just by the design of the site that its nothing to do with the transition team. I think some AoA bigwig forwarded on Kristina’s posts and ‘asked’ David to blog about them pointing out all the key ranty elements David mentions in a style that is not usually his.

Perhaps the most damage will be done by the paragraphs:

The President Elect has an old, dear friend going all the way back to Chicago, with a young son on the autism spectrum. That friend will soon be a Senior White House Official.

It is hard to imagine the President one day saying to this man: “I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to help him, and it is not desirable to even try.

I’m afraid David, that by placing words in the President elects mouth – and utterly wrong words at that – you have demonstrated a certain hubris.

Not only are you wrong that Obama has shown any inclination to say that, Kristina Chew has shown no inclination to say that either. Unlike you, she is parent to an autistic child and you have just said that she feels it is not desirable to help her son. I hope you have the grace to apologise to her publicly as these words are far from true. Maybe you should try spending some time away from the anti-vaxxers and spending some time with the _actual_ autism community – a community who work damned hard with their children. They just don’t subject them to meaningless, expensive and dangerous experimentation.

Update
Age of Autism are obviously not HuffPo readers – they just posted their own copy of the story. And then just as quickly deleted it, but not quickly enough to beat the mighty G. aoaasses click for bigger.

Generation Rescue and Change.Gov

2 Jan

Sometimes you put off a project and it goes stale.  The moment has passed, the project never gets done.  Then again, sometimes you put off a project and it gets more interesting

Such is the case of a comment I saw on Change.Gov. I saw it and thought I’d include it in a future blog post I am considering (let’s see if I write it before it goes stale!). But, instead of missing the window to blog it, enough has happened that it is even more interesting.

Change.Gov is the Obama transition team’s website. In the spirit of open government, they are allowing people to submit questions for review. Other citizens (not only US, by the way) can vote on how important a topic is and, one assumes, the subjects with a lot of votes will get noticed by the transition team.

Given that, I was not surprised to find a question submitted by Generation Rescue’s Kelli Ann Davis. The question is copied below:

“Jenny McCarthy and Jim Carrey were named 2008 Couple of the Year (www.ageofautism.com) due to their advocacy work for Generation Rescue. Why hasn’t the Transistion Team made autism a top priority and sat down with the leaders of this organization?”
Kelli Ann Davis, Reno, Nevada

Since I first saw this, Orac has blogged about it. Not only did he blog it, but he did a very uncharacteristic move: he called for a poll mob ala P.Z. Myers. Yep, Orac got people to log in to Change.Gov and vote on Ms. Davis’ question. Given that one has to actually register before voting, the effect is impressive. At this point, 200 people are voting against Ms. Davis’ comment vs. 137 pro. I don’t recall the numbers from when I first saw it, but I do know that the votes were more “pro” than “con” when I first saw it.

This has not gone unnoticed by the good people at Generation Rescue. Kim Stagliano recycled not only the Age of Autism’s methods (name calling) but recycled an old post by Mark Blaxill as well. Frankly, I am amused. I found the original post by Mr. Blaxill amusing (not in the way he intended, I am sure), and I find it amusing still.

But, that is not enough to really blog about, at least in my book. Rather, I think it is worth taking the time to put in public why I opposed Ms. Davis’ comment.

Go back and read it again. The first thing that strikes this reader is the disingenuous nature of the comment. Jenny McCarthy and Jim Carrey were named couple of the year by the Age of Autism? Huh? I guess if they figure that the Obama (or, as Ms. Davis spelled it for some time, “O’Bama”) team doesn’t know the history of their blog, that might work. However, for those of us who know the Age of Autism as a rebranded “Rescue Post”–the blog of Generation Rescue–it is an odd move, to say the least:

Generation Rescue, which they call “Jenny McCarthy’s Autism Organization” voted Jenny McCarthy and her boyfriend “Couple of the Year”. Were I, a blogger on LeftBrain/RightBrain, to name Kev “LeftBrain/RightBrain’s pick of autism leader of 2008”, would you be impressed? See what I mean?

But, the disingenuous nature of Ms. Davis’ question is just the symptom, not the real problem. Actually, I see two big problems with Ms. Davis’ proposal. (1) It has all the appearance of self promotion, both for Generation Rescue and for Jenny McCarthy and Jim Carrey. And, (2) No surprise, I am sure, but I find Generation Rescue’s “Couple of the Year” to be highly inappropriate representatives of the “autism community”.

Let’s look a bit closer at these concerns, shall we?

First, keep in mind that Generation Rescue is an organization led by business people and PR people. Even without that, it’s pretty clear that they want to break out into being accepted as a mainstream autism organization. What better way than to say that they are advising the administration on autism issues? As to Jenny McCarthy, is there anyone who doubts that she has been rebranding herself as an autism “activist”?

Still wondering about the self promotion angle? Imagine the talk show circuit next year (and as many years into the future as Jenny McCarthy autism books sell):

“Oh, yes, Oprah, as I was just saying to Barack….”

In addition to Jenny McCarthy potentially cashing in on any meeting, how long before Generation Rescue would be touting themselves as advisers to the administration?

We are talking about the people who grossly inflated the number of people who attended the Green Our Vaccine Rally for effect. I’ve heard estimates of 500 to 1,500 attendees from people who were actually there. GR claims 8,000. If they would do that, they would play a meeting with the Obama team to the hilt.

Keep in mind, these are the people who publish blog posts claiming that HHS Secretary Leavitt stated in public that of course the government knows vaccines cause autism. To back that up, they claimed that someone overheard a conversation outside a church (if I recall correctly). If it were journalism rather than cheap blogging, that would be in the running for irresponsible story of the year. But, instead, it is just an example of the extreme lengths Generation Rescue and their team are willing to go to in order to keep their story alive. What would happen if they were able to talk about closed door meetings with people close to the Obama administration?

Moving on to my second concern: are Jenny McCarthy and Jim Carrey really appropriate as advisers to the transition team? Leave out the obvious questions of the whether people who propagate bad science and, in so doing, are endangering public health. I don’t have the space here to go into what has already been covered so well by Kev on this blog (and many, many others on other blogs, e.g. AutismVox or I Speak of Dreams ). Let’s just say I’d rather have Mr. Obama listening to the sources Mr. Bush used to formulate the decision to go to war with Iraq than listening to Jenny McCarthy on autism.

For example, remember how Jenny McCarthy’s story about her encounter with Barbara Walters changed dramatically between her book version and her interview version? Can we really have someone talking to advisers to the President of the United States and then “remembering” the exchange in whatever way puts her in the best light?

Consider that hypothetical Oprah show quote I had above. Flesh it out:

“Oh, yes, Oprah, as I was just saying to Barack, vaccines caused an epidemic of autism. I could tell he was listening and understood all too well, but I think that even he is afraid to admit the truth in public”.

As to Jim Carrey…well, remember his major stumble at the Green Our Vaccines rally? When asked what vaccines could be left out of the schedule, he said “tetanus”. Seriously, he had just spoken at a rally, but he hadn’t even done the homework as to what his own side thought. Sorry, he isn’t an expert who should be advising the administration, he is still at the level where Generation Rescue people should be being coaching him on what to say. Somehow I am flashing on the stories that have been leaked about coaching sessions with Sara Palin (Africa is a continent?). No, no, no. This is not a man I would want representing me even if I did subscribe to the Generation Rescue story. He just doesn’t have the depth of knowledge to meet the task.

To conclude, let’s answer one of the questions implicitly raised by Kim Stagliano’s blog post–why are people voting against Ms. Davis’ question? My answer: people aren’t voting against Ms. Davis’ question because it’s Kelli Ann Davis. They aren’t voting against it because it is promoting Generation Rescue or Jenny McCarthy (even though those are valid reasons). They aren’t voting against it because Orac told them too. They are voting against it because what Ms. Davis is proposing is a bad idea.

At least, that was my reason.

[Note: I made minor changes in this post shortly after publishing it]

Two new blogs you need to read this new year

31 Dec

You may recall, Dear Reader, that earlier this year Change.org made a big splash when they advertised for an autism blogger for their increasingly popular social action network website. From blogs all over the autism blogosphere, readers and potential authors were urged to apply, apply, apply.

Of course it goes without saying that this was in itself a political act – I doubt very much if Change.org were quite prepared for the utter deluge of applications that hit them. I have it on good authority that applications ran into the thousands and has been by far the biggest launch Change.org have held.

Age of Autism, with its usual inherent crassness, not only informed their readers of this but also posted the private home phone number of one of the owners of Change.org. As ever, the people on that side of the fence show a startling lack of good social skills for a group that believe genes play a secondary role to vaccines.

Did I apply? Yep. Did I get it? Nope. Am I happy about that? I actually am. I would’ve loved to have carried a neurodiversity message into the heart of the largest growing social action network on the web today but although I made it to the final round, I didn’t make the final hurdle. C’est la vie.

So why am I happy? Because in a burst of what can only be described as genius planning from Change.org they have decided to appoint not one, but _two_ autism bloggers.

So what? I hear you say. Well, so, the first blogger is the truly amazing Kristina Chew. Someone whos blog will be required reading. Someone who is quite firmly on the side of autistic people.

But the absolute best thing is the second blogger. Change.org decided that they would have an autism blogger who was autistic. They settled for Dora Raymaker – an ASAN Director alongside Ari Ne’eman.

This makes Change.org the very first non-autie run political (with a small p) organisation in the US to appoint an autistic person to talk about autism. Think about that. Change.org beat ASA, Autism Speaks etc to appoint an autistic person to express an autistic viewpoint.

I am very excited about these two new autism blogs. I am thrilled that these two people beat off the competition (including me) to take a pro-autistic advocacy message to the heart of this website and this new way of campaigning. Well done Kristina, well done Dora – well done Change.org

Truly, a happy new year for autism advocacy.

NB: Official launch is not until 7th Jan so the blog will be in a state of flux for awhile. Don’t go expecting the finish product. But DO GO and join! Its expected to fully OPERATIONAL however by Jan 2nd.

New MMR and autism study: no correlation

29 Dec

OK so its not the greatest idea to blog about just an abstract but I hope to have more to bring you soon.

This new study states (again) that there’s no correlation between MMR and autism. In fact, the abstract in its entirety reads:

The MMR vaccination coverage in Malopolskie voivodeship improved rapidly and finally reached a high level during last years. The number of new cases of autism spectrum disorders in children during that time revealed a slightly rising but not significant trend, while the number of childhood autism were stable. Ecological study showed no correlation between MMR vaccination and an increased risk of childhood autism and autism spectrum disorders in children.

Clearly they’re using the phrase ‘autism spectrum disorders’ to mean to everything autism related and the phrase ‘childhood autism’ to refer to what the medical community refer to as ‘severe’ or ‘low functioning’ type of autism.

Now, this study is Polish, written in Polish. I have written to the lead author asking if they have, or expect to have, an English translation and if so if I could have a copy.

But still – the message is clear – there is no correlation between autism and MMR. Neither at ‘general’ ASD level, nor at specific ‘severe’ level.

In 2005, The Cochrane Library performed a meta-analysis and systematic review on Vaccines for measles, mumps and rubella in children. Although it had some harsh things to say about the design of studies trying to track adverse events vs fulfilment of role of the vaccine it was also emphatic in its verdict regarding the MMR and autism:

Exposure to MMR was unlikely to be associated with Crohn’s disease, ulcerative colitis, autism or aseptic meningitis (mumps) (Jeryl-Lynn strain-containing MMR)

So why am I bringing this back up again? Well, because I want to ensure that I understand the role of the Cochrance Library and I want to explain why the term ‘systematic review’ _matters_ so much. For this, I am indebted, once again, to Ben Goldacre’s truly excellent Bad Science – the book.

A meta-analysis is a very simple thing to do, in some respects: you just collect all the results from all the trials on a given subject, bung them into one big spreadsheet and do the maths on that…

….

So, if there are, say, ten randmoised placebo-controlled trials looking at whether asthma symptoms get better with homoeopathy, each of which has a paltry forty patients, you could put them all into one meta-analysis and effectively (in some respects) have a four-hundred-person trial to work with.

Now, the good thing about meta analysis is that it excludes papers of poor quality. Here’s Ben’s example – with Homeopathy again:

A landmark meta-analysis was published in the Lancet….they found, overall, adding them all up, that homeopathy performs no better than placebo….The homeopaths were up in arms…they will tell you its a stitch up….what [the authors] did, essentially, like all negative meta-analysis of homeopathy was to exclude the poorer quality trials from their analysis.

All quotes, Bad Science, pages 54 to 57.

Sound familiar?

So, back in 2005, a meta-analysis was performed by the Cochrane Library on MMR and one of its results was that:

Exposure to MMR was unlikely to be associated with Crohn’s disease, ulcerative colitis, autism or aseptic meningitis (mumps) (Jeryl-Lynn strain-containing MMR)

So – where do we go now? Do we really need to keep on churning out results and studies until every last person on the earth gets the point? Or do we cut our losses, accept that there will always be some idiots who will never get it and…move on….to a research future where we can get back to thinking about autism, how we can help autistic people to live their lives and hopefully a future where children don’t die of vaccine preventable diseases.

Why?

24 Dec

You know me, I will tell you what I think and why I think it. But there is a line. A few lines in fact. These lines shouldn’t be crossed. Do not attack children. Do not make threats of violence.

In the now infamous EoH, doing these things is seen as ‘venting’. So here’s some venting from EoH for you. I think, as a conversation, it encapsulates exactly why these people need dragging out from under their rock and it encapsulates perfectly the bull that they are not anti-vaccine. Of course they are. They are (some of them) regulars on the AoA blog and stalwart supporters of Jenny McCarthy.

Joe Harris:
Look at how far acting civil has gotten us, teen agers and young adults growing old with us
and never living on their own. Until we get loud and start standing up for our kids, they
will always continue to win even though they are child poisoning bastards vaccines are fuxxking EVIL from the pit of hell. I for one am tired of being the nice guy while they poison more children Fuxxk them to hell and If someone sends them there before god doe’s I for one will not shed a tear. Because all they are is child poisoning and killing Bastards lower than Jeffery dahmer at least he had an excuse mental illness what theirs Greed, and thinking they are God. I don’t think they can make a safe vaccine that why McCormick of the vaccine comm. stated one time “Its as safe as a vaccine can be” If you think about that statement It can be taken two ways, another words a vaccine can’t be safe. Again may they all burn in hell. If this was a card game they have nothing they are just good at Bluffing on the other hand we the parents and the courageous researchers would have four aces. I will not apoigise for my anger for my severly autistic son is really stressing me right now.

___

Lisa: thanks, I needed that 🙂 Lisa

____

Lia Costalas:
Hello… Joe.. i agree with what you posted… all the politeness is getting us anywhere.. Lia

____

sammysouthie: Unfortunately Joe we have become an apathetic society of sheep. Gone
are the days of public outrage and standing up for what is right.
Look at what happens when people vote….They complain and then put
the same people back in office. Seems the Pharmies have been having a
tea party…..They are throwing thier crap into the waters but the
public isnt.This is what happens when you have too much being civil.

_____

Lia Costalas: That is sad.. where are the SAM ADAMS???? (my personal favorite historical agitator)… Patrick Henry???? IT MUST BE US. to become agitators. I am tired.. of “meeting” with senators… ect… and in one ear.. out the other… when AIDS was first identified… wow… did society run to find cure.. cause.. treatement… that is all you heard… talk shows went all out.. NO CENSORING… now… we have censoring on autism… larry king shows cancelled… ect.. ect… Lia

_____

Amy W. Osborne: isn’t that what is behind the vaccination anyway? to injure people just enough so that they are preoccupied and docile, follow orders, etc etc?

_____

sammysouthie: —Makes one wonder, doesn’t it

____

Roz: The only ones left standing will be us. Of course, WE will be preoccupied with curing our little “canaries in the coalmine.” Thank God for them, huh? Now we all have learned an invaluable lesson.

_____

Laura Cox: Anger is ok. We all feel exactly the same way you do. I push it aside
because, if I don’t, it will cripple me, being so powerless to change
the status quo overnight. I can protect my son from further harm, but
I cannot protect all of my nieces and nephews from this grievous act
called vaccination. However, we all need to let it out now and then
(anger) and this is a good place to blow off steam. Our thoughts are
with you.

Age of Autism claim 'hundreds of case reports' of recovered children

16 Dec

A post on the Age of Autism about an interview with the New York Times describes how the interviewee believes that:

….none of our health authorities have any explanation of cause or cure [of autism], we have a whole community of doctors and parents who are actually recovering children. And, without ever treating an autistic child, interviewing a DAN! doctor who treats them, or exploring the several hundred case reports of complete recovery and thousands of stories of improvement…

I was fascinated by this. I have not ever seen one published case report of a child recovered by a DAN! doctor in a respected medial journal. In fact, its a common refrain of mine that these things do not in fact exist at all. And here the author of this post is claiming that there are ‘several hundred case reports of complete recovery’. I thought maybe there’d been an upsurge in PubMed so I went to have a look.

I found one case study that referenced DAN! methods: The recovery of a child with autism spectrum disorder through biomedical interventions. This study (for which no abstract is available) is published in ‘Alternative therapies in health and medicine‘ which claims to be a peer reviewed journal and who’s subject matter includes such medical breakthroughs as Reiki, prayer and reflexology. How this magazine got listed in PubMed I have no idea.

Anyway, suffice it to say that it is totally unsurprising that this study got published in such a publication (Eigenfactor here – compare to New England Journal of Medicine for an idea of how good it is).

So, here’s one very dodgy ‘study’. Where are the other several hundred case reports?

It is also well established that those who use Alt-Med and go on to claim recovery also use mainstream therapies (e.g Jenny McCarthy’s child who was on GFCF, some other stuff….and one-to-one speech therapy). In a 2006 study ‘Internet survey of treatments used by parents of children with autism‘, it was established that:

The mean number of current treatments being used by parents was seven….

I haven’t read the ‘study’ in the Altie journal but the experience with Jenny McCarthy’s child, and plenty of others I have read online indicates that this is true for most parents who claim to be recovering their kids biomedically. As such, you have to give weight to the treatments that are established to have some benefit already. And lets also look at the results of the recent Helt study which reported that a non vaccine related, non-biomed set of kids had somewhere between 3 and 25% recovery. This indicates that sometimes, kids just recover. For reasons we are not really aware of yet.

So I am left puzzled as to why the Age of Autism claim there are several hundreds of case reports. I am puzzled as to how they know it was the biomed intervention which precipitated the alleged recovery and I am puzzled as to how they link _any_ sort of treatment to recovery. All in all, it seems like a set of claims that are not reality based are being made. But maybe I’m wrong – if so, please – anyone from AoA – provide a link to the peer reviewed journal published several hundred of case reports that you claim exist.

I object! (Part 3)

20 Nov

If you’ve been reading these past few days, you know that I find a recent letter sent to the IACC by a number of autism organizations to be, well, objectionable (hence the post titles!). I’ve noted that I don’t like the way they claim backing from a united “autism community”. I don’t like the way they are presenting their arguments in their letter (here and here).

And now, for the last part of their letter.

Bullet point (d), or, we want a bigger say

Provisions for accountability and evaluation for the research spending are absent. Adoption of oversight, review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model, should be added to the plan.

They are asking for an “advisory board” or AAB and a grant review system. Generation Rescue attempted (and apparantly failed) to get an AAB put in place by lobbying he Secretary of Health and Human Services. Now they are pushing the IACC to institute an AAB and also add DoD grant review model.

Let’s look at these proposals one at a time, starting with the AAB.

This is not the time to institute the Autism Advisory Board. President-elect Obama will soon be in office. He has specific ideas on autism and disabilities in general. These include an “autism czar” to coordinate autism activities. Let Mr. Obama and his team make the next changes in the structure of how autism research activities are conducted.

Second, the IACC is already an advisory board. Why are people asking for a second layer, when the IACC process has been working well? OK, you got me, it’s a good bet that these people don’t think the process has been working well. If I were to venture a guess, they are unhappy about the lack of a prominent statement about the “epidemic” and/or “vaccines” within the Plan.

Would an Advisory Board change that? Let’s look at how the Advisory Board is mentioned in the report that accompanied the CAA (note that the “autism advisory board is not mentioned within the CAA language itself):

[congressional report] The committee further re-examined the Interagency Autism Coordinating Committee (IACC). In particular, the committee wanted to increase the amount of public participation (from two individuals) to at least six. In addition, the IACC has been tasked to make recommendations to the Secretary regarding the public participation in decisions relating to autism spectrum disorder. For instance, the committee notes that the IACC may recommend providing other, additional, formal mechanisms, such as an Autism Advisory Board, to provide additional public feedback and interaction. Further, the Secretary may opt to provide such a mechanism without the recommendation of the IACC.

The committee expects that the IACC will be the primary mechanism for the coordination of all research, surveillance, and early detection activities within the Department of Health and Human Services. As agencies implement specific activities related to autism spectrum disorder, they should strongly consider those activities outlined in the Autism Research Matrix.

So, even if an Advisory Board were formed, it would still be the IACC that has the task of coordinating autism activities within HHS.

That would seem to me to be a potential reason why they are now asking for something akin to the DoD grant review process–to add some actual power–oversight and control–to the new “advisory” groups they are proposing.

Again, perhaps someone can correct me here in what I am about to say. But from my perspective I can’t see why the NIH needs a second layer of grant review. For the DoD, an agency that is not primarily involved in medical research, I can see a review board. For the NIH, an agency whose functions already include a peer-review grant process, I don’t see that the case is very clear at all for an additional review board. Let the NIH do what it is chartered to do.

Let’s look at that last bullet point from the letter:

[Letter]The planning process diminished the voices of important segments in the autism community. Future activities related to the SP should ensure integral participation of the diverse community representing families and individuals with autism.

First, I’d switch the wording in that last sentence to “….representing individuals with autism and their families.” (and I wouldn’t object at all to people who would change it to “…representing autistics and their families”)

Second, the very segments of the autism community who are signing this letter were given ample opportunities to be heard. IACC meetings have been dominated by a very few with a vary narrow message. An entire “Town Hall” meeting was held on the West Coast to obtain more input. Letters have been sent, investigations mounted and pressure applied. It is quite a stretch to state that voices were “diminished”.

Having your voice “heard” and having your requests acted upon are very different things, however. And that is the flaw in the logic of this letter: the voices were heard, but it appears that they carried a message that didn’t meet the basic criteria for inclusion in the Strategic Plan: a basis in sound science.

To take a recent example: People can say over and over, “we want research into chelation”. But, if (a) there is no reason to suspect chelation would help as autism is not heavy metal poisoning, (b) there is a possibility that chelation could hurt as demonstrated by recent rodent studies

Conclusion, or, tell them again

[letter]We ask that the IACC approve these specific action items: (a) adoption of amendments to the plan responsive to the above 5 concerns; (b) specification that research spending be at least the CAA minimum and establishment of a workgroup to be convened in January 2009 to develop recommendations to the IACC for increasing the research spending to at least that minimum and adding objectives which will bolster research on the environment, gene-environment and treatment; (c) inclusion of oversight provisions including an AAB and DOD-model review process; and (d) specification that oversight bodies and workgroups have strong and diverse community representation.

Which pretty much summarizes the bullet points above. My eye was drawn to the idea that a workgroup be convened in January 2009. Why? Could it be that they would like this workgroup to be a fait accompli when President Obama takes office? Again, let Mr. Obama put his plans into action.

The final short paragraph caught my eye as well:

[letter]Each day, decisions are being made on autism research by NIH and other federal agencies which are outside of the SP. It is imperative that the plan be improved in the areas noted above at the November 21, 2008 IACC meeting.

The strategic plan (SP) is not approved yet. By definition, decisions are being made that are outside of the Plan. Also, I sincerely hope that decisions continue to be made outside of the Plan. Who can predict what may happen in the next few years that may require action outside of the Plan? As the old saying goes, if we knew what the answers were going to be, it wouldn’t be “research”. I really have a hard time figuring out why they included that sentence in this paragraph.

The letter is then signed:

Autism New Jersey (formerly COSAC)
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

Much speculation could be had about what tradeoffs were made in order to get all these groups to sign the above letter. It isn’t much of a stretch to say that the letter doesn’t go nearly as far as many of the signatories would have gone on their own in the area of mercury and vaccines.

It is notable that Autism Speaks signed on to a letter with a number of groups that have been quite negative towards AS (to put it mildly). It is also notable that at least one, and this one major, autism research organization is not represented on this list.

I realize it is just one rather short letter, and my responses have been rather long in comparison. I also realize that many of these points are probably obvious to those at NIH and/or working on the IACC. And, yet, I somehow had to do this!

On to more important topics soon!

I Object! (Part 2)

19 Nov

It’s amazing that a relatively short letter could be so objectionable as to take multiple blog posts to discuss.

And, yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include vaccines.

Continuing on with bullet points (b) and (c)…

Bullet point (b), or “you are leaving money on the table”

[Letter](b) The plan fails to allocate commensurate resources. The CAA authorized $645 million for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

Who is going to say no to “we should apply more resources to the situation”? Certainly not I. But I’m not an MBA. I count resources in terms of how many good research groups are doing quality research in relevant areas. Counting the money, that comes second.

This is similar to the method used by the IACC. People tend to think–and this letter helps perpetuate–the idea that the CAA appropriated money and that the IACC worked from that budget to create the Plan.

Both ideas are incorrect.

First, in admittedly confusing language, the CAA authorized the appropriations. The CAA states, “…there is authorized to be appropriated..”, not, “this amount is appropriated”. Another way to look at it is to see how often “subject to the availability of appropriations” is used in the text of the CAA. It isn’t as though there is a bank account with $645M waiting to be tapped into.

Second, the IACC did not work from a budget and then decide on a Plan. They didn’t say, “Well, we’ve got $645 million, how will we spend it?” What they did was say, “what needs to get done?”. Near the end of the process, they passed the Plan on to the implementation subcommittee to draft the budgets for the various projects.

This sounds like the much more defensible method. The IACC can go to congress and say, “this is what we need to get the job done.” Had they come up with a budget higher than the CAA allocated, they would have been in a good position to ask for more. They are (I hope) in a good position to get their budget fully funded–they can defend why they came to the total cost in their budget.

That said, of course I’d like to see more research funded. But, I’d like to stay on a friendly partnership with the NIH too. Presenting their actions inaccurately (as this letter appears to do) doesn’t accomplish that in my mind.

let’s look at what the CAA authorized to be “appropriated“:

[Combating Autism Act]`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $15,000,000.
`(2) For fiscal year 2008, $16,500,000.
`(3) For fiscal year 2009, $18,000,000.
`(4) For fiscal year 2010, $19,500,000.
`(5) For fiscal year 2011, $21,000,000.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $32,000,000.
`(2) For fiscal year 2008, $37,000,000.
`(3) For fiscal year 2009, $42,000,000.
`(4) For fiscal year 2010, $47,000,000.
`(5) For fiscal year 2011, $52,000,000.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out section 399CC, 409C, and section 404H, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $100,000,000.
`(2) For fiscal year 2008, $114,500,000.
`(3) For fiscal year 2009, $129,000,000.
`(4) For fiscal year 2010, $143,500,000.
`(5) For fiscal year 2011, $158,000,000.’.

So, the $645 million number comes from section c. Two things to notice. First, there are large sums in sections (a) and (b) as well. I hope they are getting appropriated. Second, notice that there is money budgeted for 2007 and 2008 in that number. Remember that the CAA hasn’t been funded yet? Has NIH been sitting on their hands, waiting for the budget before they do autism research? Hardly.

The NIH budget for autism in 2007 is estimated at $127 million ($27M more than the CAA called for all IACC sponsored research, which includes CDC and other agencies). Similarly, $128M is the estimated budget for 2008 ($14M above the IACC budget).

Perhaps I am missing something. It is quite possible. But it appears to me that the NIH is working in good faith here.

Again, given the urgent need–to identify and serve the underserved in this country–I would consider there to be a great reason to increase resources applied by the IACC. I just don’t think that is want the signators of that letter had in mind. Consider the next point they make:

Bullet point c, More environmental research, or, what happened to the “V” word?

[Letter]Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

As already discussed, I found this statement interesting for what it doesn’t say, far more than what it says. What it doesn’t say explicitly is “mercury” or “vaccines”. As noted in that previous blog post: if the signatories of that letter are OK with this wording, it should be OK in the Strategic Plan.

Sullivan’s take

The order of these two bullet points sends a clear message: The Plan doesn’t use all the money “appropriated” and, yet, the Plan should put additional resources into environment and treatment.

Or, “why don’t you take some of the $200 million and spend it on these areas?”

It would be a good question if that was the way the process worked. (A) the money wasn’t appropriated (so there isn’t $200M sitting unused) and (b) the Plan was built on a “what needs to be done” basis, not “how much do we have to spend” basis. The push for more environment/treatment really needs to be justified in terms of “what needs to be done”.

But, again, I’d agree that more resources would be welcome. And, again, I would suggest attempting to meet the great need of serving the underserved. Research into services like the Taft Transition to Independent Living program comes to mind.

more to follow…

Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

← Older Entries
Newer Entries →