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IACC Strategic Plan: Good for us?

6 Mar

By ‘us’ I mean my idea of what the neurodiversity community is.

The IACC released their strategic plan for the future direction of autism research yesterday. This is the basic plan that will form the basis of US (and probably world) autism research for the next 10-20 years. It sets out what it thinks the problems are, what should happen to address those problems and what specific research targets should be set to help address those problems.

So, is it good for us?

On one hand it is. In some places the document makes a clear distinction between the need to address the disabling issues that autism can bring and leaves aside cure language:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD.

Cool. Fine by me. And yet later on in that same paragraph:

Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

Hmmm. Possibly less good. I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.

There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

And so we turn to the ‘v’ word. Vaccines are given fairly short shrift in the plan. I didn’t think so at first. When I read this paragraph I was dismayed:

To address public concerns regarding a possible vaccine/ASD link, it
will be important over the next year for the IACC to engage the
National Vaccine Advisory Committee (NVAC) in mutually informative
dialogues. The NVAC is a Federal advisory committee chartered to
advise and make recommendations regarding the National Vaccine
Program. Communication between the IACC and NVAC will permit each
group to be informed by the expertise of the other, enhance
coordination and foster more effective use of research resources on
topics of mutual interest. Examples of such topics include: studies of
the possible role of vaccines, vaccine components, and multiple
vaccine administration in ASD causation and severity through a variety
of approaches; and assessing the feasibility and design of an
epidemiological study to determine whether health outcomes, including
ASD, differ among populations with vaccinated, unvaccinated, and
alternatively vaccinated groups.

This is in section III under the heading ‘what needs to happen’. As I say at first I thought this was terrible. But then I read it again and noticed that what the plan is actually saying is that the IACC and NVAC should talk about these things. They’re not committing money to them.

Vaccines in fact feature nowhere as a short or long term objective in the whole plan and are mentioned again once as a possible research opportunity for people to keep an eye on any developing science.

Overall its a mixed bag. Good on vaccine stuff, good on recognition of need for services, good for recognition of adults but ambiguous at best on its intent for the idea of curing autism.

Advocacy Success: NIMH Use of Stimulus Money Includes Services-Research

5 Mar

If you’ve read what I’ve written on the IACC process, and been able to get past my annoyance with the political maneuverings, you know that I’ve had great hope for the research into areas involving services and adult issues.

Given that, you can imagine that I was quite pleased to get this email from Ari Ne’eman of ASAN (the Autistic Self-Advocacy Network), discussing recent RFA’s (Requests for Applications) for research topics in specifically these areas.

Hello,

Recently, the National Institute of Mental Health released several Request for Applications (RFAs) on services-research topics relevant to autistic people and our families as part of a broader effort to identify NIMH’s priority areas for use of stimulus funds. The RFAs utilize funds specifically allocated under the recently passed American Recovery and Reinvestment Act (aka: the Stimulus bill). As you may be aware, the Autistic Self Advocacy Network and the broader autistic and disability communities have been lobbying for increased representation of services-research and bioethics issues in the NIH research agenda for some time. We’re pleased to share with you these RFAs, which hopefully will yield research that will have a positive impact for our community.

04-MH-104 Access to services by individuals with autism and their families. Engage well-characterized subjects and families in existing autism research activities in preliminary studies exploring variations in access to and use of services, identification of targets for services interventions, and exploration of how variations in service use affect family functioning in diverse populations. Contact: Denise M. Juliano-Bult, M.S.W. 301-443-3364, djuliano@mail.nih.gov

02-OD(OSP)-104* Ethical Issues in the Translation of Genetic Knowledge to Clinical Practice. Genetics and genomics have great promise for the development of personalized medicine, yet the ethical, legal and social implications of both the research and application of genetic and genomic knowledge and technology are far reaching. Studies are needed to better understand the factors that influence the translation of genetic information to improved human health and the associated ethical issues. Examples of studies include those to address ethical issues related to broad sharing and use of new genetic information and technologies for research to improve human health, human subjects protection in genetic and genomic research, the identifiability of genetic/genomic information and how our understanding of identifiability is evolving, return of research results and incidental findings to subjects, alternative models of informed consent for broad data sharing for research, and the impact of intellectual property (IP) issues on development of new technologies. OD(OSP) Contact: Abigail Rives, 301-594-1976, rivesa@od.nih.gov; NIMH Contact: Jean Noronha, Ph.D., 301-443-3367, jnoronha@mail.nih.gov

05-MH-101* Leveraging Existing Healthcare Networks for Comparative Effectiveness Research on Mental Disorders and Autism. Existing large integrated healthcare networks are needed to more efficiently conduct large-scale effectiveness trials in “real-world” patient settings. The NIMH solicits individual or collaborative, linked grant applications from researchers with experience conducting studies within large integrated healthcare delivery systems to develop and test infrastructure to efficiently conduct trials on the effectiveness of treatment, preventive and services interventions to improve care for people with mental disorders and autism. Applicants can propose studies to 1) demonstrate the ability to identify, recruit and enroll large patient populations into clinical trials, 2) harmonize electronic medical record data across multiple integrated systems for research use, 3) pool data for common analyses, and 4) build capacity for the collection and storage of biologic material. Contact: David Chambers, D.Phil., 301-443-3747, dchamber@mail.nih.gov

05-MH-103* Collaboration with AHRQ Comparative Effectiveness Research Program
In FY09 and FY10 the Agency for Health Research and Quality (AHRQ) plans to support research grants (PA-09-070) on comparative effectiveness of clinical treatments and services as authorized in the Medicare Prescription Drug, Improvement, and Modernization Act (MMA) Section 1013. MMA section 1013 mandates two mental health categories: Depression and other mental health disorders; and Developmental delays, attention deficit hyperactivity disorder and autism. NIMH is interested in funding ancillary studies including but not limited to: 1) studies on the comparative effectiveness of important new or existing technologies; and 2) assessment of the comparative effectiveness of treatments that are commonly administered to children but have been evaluated for safety and effectiveness in adult populations. Two year studies will contribute to successfully implement the mental disorders components of MMA Section 1013 by utilizing AHRQ networks ( e.g. EPCs, DEcIDE, CERTs, PBRN, ACTION, etc) to generate information for health care decision-making. Contact: Agnes Rupp, Ph.D., 301-443-3364, arupp@mail.nih.gov

04-MH-105 Developing interventions and service delivery models for the transition to adulthood. Conduct pilot studies to develop and test developmentally appropriate, evidence-based prevention interventions and service delivery models for youth with who are at high risk for, or experiencing severe mental illnesses who are transitioning to adulthood. Studies would propose strategies to address discontinuities in service systems and health care financing. Contact: Joel Sherrill, 301-443-2477, jsherril@mail.nih.gov

Furthermore, NIMH also released the funding of the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan as an RFA. ASAN has been active in lobbying for the inclusion of quality of life oriented research in the IACC’s priorities since this IACC’s inception in 2007. While having both positive and negative components, the IACC Strategic Plan includes services- and quality of life-research components, including research on meeting the needs of autistic adults. It can be found below.

04-MH-101* Autism: Addressing the challenge. Target research gap areas identified by the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, including biomarkers, novel interventions, and new tools for screening, among other topics. Contact: Ann E. Wagner, Ph.D., 301-443-5944, awagner@mail.nih.gov

We encourage you to transmit this information to your contacts in the research and scientific communities, encouraging them to apply for funding for projects that will positively impact the lives of autistic people while working with the self-advocate community to ensure inclusive and participatory models of research, as we practice through our partnership with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Please feel free to e-mail us at info@autisticadvocacy.org with questions on ASAN’s research advocacy and how you can get involved. If you are a researcher, interested in interfacing with ASAN and our research partner AASPIRE on research priorities, design and implementation, we encourage you to contact ASAN Board Member and AASPIRE Project Co-Director Dora Raymaker at dora@aaspireproject.org.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Did you think that was it? More MMR bull arrives

25 Feb

The recent decision by the Special Masters in the Autism Omnibus case that MMR/thiomersal can’t cause autism according to evidence presented by HHS and lack of evidence presented by Master et al hit the mercury militia hard. They genuinely thought they were going to win.

But, of course, there was a ‘Plan B’ ready just in case. Today we see its co-ordinated unveiling. In part one, that scientific heavyweight Jenny McCarthy, together with her partner Jim Carrey released a press release:

Jenny McCarthy and Jim Carrey’s Los Angeles-based non-profit autism organization, today announced that the United States Government has once again conceded that vaccines cause autism…

Both the inference and the statement of fact are in error here. The United States Government has _never_ conceded that vaccines cause autism. I challenge McCarthy and Carrey to show the statement that contradicts me. Team McCarrey’s announcement today also fails to establish that the US government have conceded vaccines cause autism.

Of course, the historical reference is to Hannah Poling. As has been discussed numerous times, Hannah Poling’s autism has not been shown to have been caused by vaccines. I have asked various people, including David Kirby numerous times to provide back up to their belief the government have said vaccines caused ehr autism. They cannot. They have not. In point of fact, only three of Hannah Poling’s symptoms that were described by both HHS and a scientific case study co-authored by her father as those being caused by vaccines, tally with the DSM (IV) criteria for ASD.

The case of Hannah Poling is a red herring.

As we shall see, so is this ‘new’ case.

Team McCarrey go on:

The announcement comes on the heels of the *recently unsealed* court case of Bailey Banks vs. HHS

If by ‘recent’ one means July 2007 then they may have a point. But I don’t think ‘recent’ can really apply to a case which has had open access to it (Kathleen blogged about it in May 2008) for about a year and a half. So why lie? To add to the drama, whip up mystery and confusion of course.

But now we get to the meat of it – the actual ruling. In Part II of today’s coordinated attack, RFK Jr and David Kirby blogged about this case.

Kennedy jumps straight in:

…last week, the parents of yet another child with autism spectrum disorder (ASD) were awarded a lump sum of more than $810,000 (plus an estimated $30-40,000 per year for autism services and care) in compensation by the Court, which ruled that the measels-mumps-rubella (MMR) vaccine had caused acute brain damage that led to his autism spectrum disorder.

Whereas David is a tad more circumspect:

Is vaccine-induced ADEM (and similar disorders) a neurological gateway for a subset of children to go on and develop an ASD? That question will now become subject to debate…Special Master Abell had no trouble linking MMR to ADEM in Bailey Banks’ case. But linking his ADEM to PDD/ASD was more difficult.

So, lets rewind a little. Bailey was awarded a payment because he was found to have suffered vaccine induced damage. Cool. Thats the system working as it should – a child is damaged by a vaccine, they get compensated. What the MMR vaccine was established to have done in Bailey’s case was cause something called ADEM. What McCarthy, Carrey, Kennedy and David are now all claiming is that this ADEM resulted in an ASD diagnosis.

They rest their case on the conclusion of Special Master Abell:

The Court found that Bailey’s ADEM was both caused-in-fact and proximately caused by his vaccination. It is well-understood that the vaccination at issue can cause ADEM, and the Court found, based upon a full reading and hearing of the pertinent facts in this case, that it did actually cause the ADEM. Furthermore, Bailey’s ADEM was severe enough to cause lasting, residual damage, and retarded his developmental progress, which fits under the generalized heading of Pervasive Developmental Delay, or PDD. The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine, and that this chain of causation was not too remote, but was rather a proximate sequence of cause and effect leading inexorably from vaccination to Pervasive Developmental Delay.

On the fact of it, it looks like they are right. But they aren’t.

Bailey has a diagnosis of PDD-NOS (Pervasive developmental disorder not otherwise specified) which is indeed a subtype of ASD.

However, whilst PDD-NOS is a subtype of ASD (alongside autism etc). ASD is in turn a subtype of PDD. As the National Dissemination Center for Children with Disabilities notes, the term PDD actually refers to a category of disorders and is not a diagnostic label. So when Abell refers to Bailey’s vaccine induced ADEM as leading to PDD he is not referring to ASD. He is referring to PDD. Not PDD-NOS, which _is_ a subtype of ASD but PDD, of which ASD itself is a subtype. Or, to quote Wikipedia:

PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs.

Abell made something of a worrying statement in his conclusion. I’ll quote from David Kirby:

Abell also chided MacDonald for his assertion that “all the medical literature is negative” in regards to an ADEM-PDD link. “However, soon thereafter, he corrected this statement by clarifying, ‘I can find no literature relating ADEM to autism or [PDD],'” Abell wrote. “It may be that Respondent’s research reveals a dearth of evidence linking ADEM to PDD, but that is not the same as positive proof that the two are unrelated, something Respondent was unable to produce. Therefore, the statement that ‘all the medical literature is negative’ is incorrect.”

Was any evidence that there _is_ a link between ADEM and PDD produced? I’ll have to read through more carefully. Its worrying that the SM is reduced to ‘chiding’ a witness for such a thing as a clarification of terms. Wasn’t he more worried that there was an extreme lack of evidence linking ADEM to PDD at all? Did Petitioners produce _any_ evidence that there was a link? A quick search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’. I don’t want to second guess a Special Master but it does make me worried that maybe he simply didn’t get some of the science.

David also lists some of the symptoms of ADEM:

Symptoms usually appear within a few days to a couple of weeks. They include: headache, delirium, lethargy, seizures, stiff neck, fever, ataxia (incoordination), optic nerve damage, nausea, vomiting, weight loss, irritability and changes in mental status.

None of these say autism to me. I also did fine one ADEM paper in PubMed together with measles:

We report a seven year old male with measles associated acute disseminated encephalomyelitis (ADEM) despite having received measles vaccination in infancy. The diagnosis was based on serum antimeasles antibodies and MRI brain. The patient was managed with high dose corticosteroids along with supportive measures. There was a complete neurologically and physica recovery.

There was a complete mental and physical recovery. This doesn’t seem to indicate causation or autism.

In my opinion based on what I’ve read so far here we have a little boy who either already had or was on the cusp of PDD-NOS. He was also vaccine damaged resulting in ADEM….and thats where the link breaks down. It might be enough for 50% and a feather but the fact that PDD is not PDD-NOS, together with the total lack of any evidence I can see to link ADEM to PDD, let alone PDD-NOS speaks volumes.

Send feedback before tomorrow's IACC meeting

3 Feb

The next IACC meeting is tomorrow. One subject sure to come up is the proposed vaccine initiatives. These are projects that were added to the plan (outside of the normal procedure) and later removed. Instead of actual initiatives (planned research), vaccines are now discussed in the Plan as something the IACC needs to get further input on–from the vaccine experts.

If you think, as I do, that the Plan has been delayed long enough by the organizations promoting vaccine causation, let the IACC know. You can email the IACC at iacc@mail.nih.gov.

Alternatively, as discussed in a comment here a web based form has been set up here to allow you to give feedback easiliy.

You can go to that site, enter your information and message and send feedback to the IACC and Dr. Insel, director of the NIMH and chair of the IACC.

The form has a default message, which I have copied below.

Dear Dr. Insel,

As you are well aware, some initiatives were inserted into the IACC’s Strategic Plan in December which would budget for vaccine related research. As you yourself noted in the January meeting, those initiatives did not go through the standard procedure and were not cleared by the science subcommittees.

I approve of the move to submit those initiatives to a re-vote in the January IACC meeting, and agree with the majority of the IACC members that it is inappropriate to keep these initiatives in the Plan at this time.

In addition, I would like to express my concern that the Strategic Plan process has been significantly delayed already by attempts to incorporate vaccine language, and I would urge you to not allow these delays to continue. Now is the time for the first Strategic Plan to be submitted to congress and for the research called for in the Combating Autism Act to begin.

Respectfully submitted.

It appears that groups such as Generation Rescue are fine with research being delayed as long as it keeps hope alive for the vaccinated/non-vaccinated comparison study.

That’s who the IACC is hearing from right now. Do you want that to be the only opinion they hear?

Autism research is being delayed. Are you angry yet?

3 Feb

The Strategic Plan–the document which outlines how the HHS agencies are supposed to conduct autism research in the next few years–has been seriously delayed by repeated attempts to insert vaccine language.

The Plan is basically ready to be finalized. Months later than it should be because, well, people (read: Lyn Redwood) keep monopolizing the time for the meetings to discuss vaccines.

Would you like to see autism research move forward? Would you like to see the Combating Autism Act money actually appropriated and spent? Or, would you like to see future meetings continually monopolized by this one question?

If you are like me, you would like to see good research start. I’ve listed some of the initiatives that are stalled below. Good stuff. If you would like those projects to start sooner rather than later, send an email to Dr. Tom Insel, director of the NIMH and chair of the IACC. Let him know that it’s time for the IACC

Here are some points–

1) The Strategic Plan process has been significantly delayed by vaccine-oriented autism organizations

2) The proposed vaccine initiatives have not been checked by science subcommittees. I.e. they were inserted outside of the regular procedure.

3) Combatting Autism Act funded research has been stalled by the political maneuverings of the vaccine-oriented autism organizations.

4) It is time to put the CAA to work.

Here, I’ll make it easy for you: click here

Edit the email however it suits you. Hit send. Let the IACC know that CAA funded autism research should no longer be stalled by people pushing for vaccine research over all else.

Just in case you aren’t annoyed enough, here are some research initiatives that could be starting if the Plan were finalized rather than still in the tedious discussions by those who would rewrite it:

$5M on research for adults, seniors and adolescents:

Conduct at least two clinical trials to test the efficacy and cost-effectiveness of interventions, services and supports to optimize daily functioning for adolescents, adults, or seniors living with ASD by 2012. Estimated cost: $5,000,000 over 5 years.

Study quality of life for adults with ASD:

Launch at least two studies to assess and characterize variation and quality of life in adults living with ASD by 2011. Estimated cost: $1,500,000 over 3 years.

Randomized controlled trials–for both the very young and older kids. Yep, finally the RCT studies for

Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011. Estimated cost: $15,000,000 over 5 years.

Launch three randomized controlled trials of interventions for school-aged and/or adolescents by 2012. Estimated cost: $14,000,000 over 5 years.

Genetic studies, anyone?

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. Estimated cost: $40,000,000 over 4 years.

And there is a lot more. A lot more including environmental factors, gene-environment interactions, biological markers–all stuff that is supposed to be near and dear to the hearts of the vaccine-orgs. One could understand them stalling the Plan if it was all genetics and adults and other subjects they find uninteresting, but the Plan is chock full of exactly what these orgs have been asking for.

Heck, I don’t see why their membership isn’t up in arms that these projects are being stalled. Just goes to show that the vaccines are really far and away the number one topic. Not surprising, but it is interesting to see them stall their “own” research projects for this one issue.

The vaccine-autism org spin on the IACC

2 Feb

The vaccine-oriented autism orgs are claiming that the IACC acted improperly when they removed the vaccine initiatives from the Strategic Plan. They claim that this wasn’t on the agenda. Uh, yeah.

Let’s take a second look at this, eh? Because, from what I can see, not only is there a lot of spin being added to this story, the spin is filled with hypocrisy.

These vaccine initiatives were added at the December IACC meeting. Here’s the agenda for that meeting. I don’t see where it says, “Add new initiatives”.  And, yet, here they are in the draft of the Plan.  Note that the vaccine initiatives are in all red–they were added at that meeting.

That’s not “according to procedure”, if we take the SafeMinds/TACA/GR/NAA spin where it has to be clearly in the agenda.

It isn’t even “according to procedure” in the real sense.  Science based initiatives are supposed to be generated by subcommittees who vet them based on need and whether they have a reasonable scientific basis.

Or, to put it another way–vaccines were added to the Plan at the last minute as part of an end-run around the system by Lyn Redwood. And, now, she and the vaccine-orgs are complaining that the removal of these initiatives is part of a “improper action” or some such nonsense because it wasn’t in the agenda.

Not merely a weak argument, but hypocritical as well.

Let’s take a look at some similar actions.  The January IACC meeting included an attempt by Lyn Redwood to basically rewrite the introduction to the Plan. (By the way, one of the IACC members called Lyn Redwood out (politely) on her constant attempts to rewrite the Plan, noting how this has delayed the entire process considerably. Thank you, whoever you are.)

Let’s take a look at the agenda for the January meeting. Do you see any mention of rewriting the introduction in there? I don’t. So, what do we have here? We have Lyn Redwood attempting to circumvent the procedure and introduce new initiatives outside of the process. Then, when they are removed, she cries foul, claiming that others are working outside of the process?!?

Clearly, this is a political move.  Adding vaccines to the Plan was a political move, not a scientific move.   The complaints lodged against the removal of the vaccine initiatives are political, not reality based.

And, while all this plays out, good research is stalled.

That’s a complete shame.

Strategic Plan: fact and fiction

2 Feb

If you’ve been reading some of the autism blogs lately, you’d think that the only question that the NIH has to consider on autism is whether to study vaccines. That’s because, it’s all the autism organizations seem to be talking about with respect to the IACC and the NIH.

Yes, I’ll admit I’ve contributed to the pervasiveness of the vaccine discussion by responding to those blogs. Just to get that out.

The big stink lately is the fact that the vaccine-specific initiatives were voted out of the IACC’s Strategic Plan in January. Autism Speaks and the small groups like Generation Rescue, NAA, TACA and SafeMinds (as an aside—why are there so many clone orgs? Do they really represent different views?) all issued statements or harsh words about this change.

The story being propagated is basically this: “All the money is going into genetic research. We asked for this small thing and they blocked it”

So, let’s do something different than the vaccine-orgs, eh? Let’s look at some of the initiatives that are still in the Plan. Let’s discuss what is really happening on that front. There is a lot more to discuss about the reality of the Plan, but I figure since no one wants to actually look at the initiatives, it’s fertile ground.

The Plan is divided into section (think chapters) according to “questions”. Let’s look at a few sections and pick a few initiatives out to consider.

Question 1: When should I be concerned?

Identify 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. Estimated cost: $30,000,000 over 5 years.

Develop at least 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. Estimated cost: $40,000,000 over 5 years.

Holy Moly! I’d expect end-zone victory dances over something like that–$30M for biomarkers? Another $40M that includes biological heterogeneity? Isn’t this exactly what these organizations claim they want—recognition and research into the biological underpinnings of autism?

Instead of victory dances, we get silence from the vaccine-orgs on these initiatives. It’s all “what happened to vaccines!”

Here’s one that I wouldn’t expect them to trumpet, but my eye was captured by this:

Validate and improve the sensitivity and specificity of new or 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. Estimated cost: $5,000,000 over 3 years.

My eye was captured, but that’s because I am really into the idea of identifying underserved populations like adults, and racial and ethnic minorities. I don’t expect the vaccine-orgs to support this since admitting there are underserved populations threatens the “epidemic”, so I didn’t expect the vaccine-oriented organizations to comment on that.

OK, let’s move on to the next “question”:

Question 2: How can I understand what is happening?

Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. Estimated cost: $6,000,000 over 4 years.

Whoa! Did I read that correctly? $6M for studies on immune system interactions in the development of ASD? And, from the vaccine-orgs that called for this research? The sound of one hand clapping?

OK, the really big study for this section is this one:

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, with a special emphasis on females, youths, and adults with ASD change over time as compared to typically developing individuals by 2020. Estimated cost: $50,000,000 – $100,000,000 over 12 years.

Again, they are tracking the “biological” side of autism. Not a word of welcome from the vaccine-orgs.

The study above is one of the most critical that the Plan can call for, in my most humble opinion. How many times have we all asked or read others ask, “how will things look into the future?” Wouldn’t that really help answer questions about who “recovers”? Won’t Seriously, wouldn’t it be nice to understand how many people show large gains? Although lets face it, it happens even without “biomed”.

And, yes, I am very glad to see the extra emphasis on adults and females as well, by the way.

Question 3: What caused this to happen and how can it be prevented

This is the section where the vaccine initiatives were shoehorned in. Let’s take a look at what is still in.

Check out this big one:

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. Estimated cost: $40,000,000 over 5 years.

Wow! $40M in gene/environment interactions. How much closer to the supposed agenda of the vaccine-orgs can one get? And yet, once again, the vaccine-orgs aren’t talking about it.

How about two more initiatives:

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. Estimated cost: $10,000,000 over 5 years.

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. Estimated cost: $10,000,000 over 5 years.

Another $20M on environmental issues.

I think the point is made—just in this list there are something like $100M to $200M in funding for the biology of autism and environmental factors.

Why don’t the vaccine-orgs talk about these initiatives? One could speculate that it hurts their political maneuvering complaining about the removal of the vaccine initiatives. “Senator, they gave us $100M for exactly what we asked for, but we didn’t get everything”. Doesn’t sound so good, does it?

But, and this is important, these same vaccine orgs weren’t trumpeting the inclusion of all these biology and environment initiatives even before the vaccine initiatives were removed.

That’s why I keep referring to them as “vaccine-orgs”. It seems vaccines are the one and only issue they care about. Sure, they gave some lip-service to environment and biology. But now it’s as if these initiatives don’t exist and aren’t important. If you listen to their spiel: “Poor us, we asked for this small vaccine initiative, but all we got was genetics”.

Genetics? Yep, it is in the Plan. And rightly so, I will add. There is real evidence for genetic links to autism. If we are to understand autism, even environmental causes, we need to have the genetic information. Take this initiative, for example:

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

That’s a big project, and that’s what the vaccine-orgs would like everyone to think is the core of the Strategic Plan. But, as we’ve seen, it just isn’t fair to paint the Plan as emphasizing genetics while ignoring environment and biology.

There is a big push right now to stall the Strategic Plan (as though it hasn’t been delayed enough already by the constant attempts to rewrite the Plan by Lyn Redwood. If you think I am the only one who thinks this, listen to the last IACC meeting.) Yes, the same organizations who called for research into the environment and gene-environment interactions are willing to stall that research for one reason: vaccines.

Who thinks that TACA or Generation Rescue or any of the other small orgs would sit quietly by and see all this research stalled if it weren’t for the possibility of getting vaccines into the Plan?

Why should the rest of us sit quietly and let them stall progress towards a Strategic Plan that includes good research projects on topics like lifespan issues?

We shouldn’t.

Did the IACC act in bad faith?

17 Jan

A slew of Press Releases from Safe Minds and the NAA appeared today decrying the IACC’s re-vote on two pieces of autism/vaccine research. SafeMinds say:

In a highly unusual departure from procedure, government representatives to the Federal Interagency Autism Advisory Committee (IACC) voted this week against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress

NAA said:

In an unprecedented move on Wednesday, the Interagency Autism Coordinating Committee (IACC) removed previously approved vaccine safety research from the Strategic Plan for Autism Research objectives…. The committee’s action is in direct opposition to the majority of its public members who support vaccine research, and to the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

So, there’s a number of issues that need addressing. Lets take them in the easiest to address first.

1) The allegation that the re-vote is ‘highly unusual’ or a ‘departure from procedure’ or ‘unprecedented’.

Well, it may well be unprecedented. Thats because this is only the second time that vote was taken on this issue. The first time they voted one way, this time they voted another. If this was the 300th vote then NAA might have a point. As it is, they don’t. They’re using these as Scare Words to make the situation sound alarming.

I’ve talked to a number of people who attended the IACC meetings both in person and via the phone. The claim that the re-vote was a ‘highly unusual departure from procedure’ is rubbish. Why? *Because there is no procedure* . One person I spoke with said:

[There is]…no requirements other than to vote on approving or not approving the plan. There is not even a requirement to vote on individual initiatives!

Another person said:

[T]here are some rules–e.g they can’t hold a meeting later than the agenda says. In December, Lyn [Redwood] was calling for people to work into the night, but Insel canned it saying the rules are very clear on that.

But in the matters of voting, re-voting etc everyone was in total agreement. There is no procedure. This puts an instant black mark against the NAA and Safe Minds c;aims and reveals it as an attempt to hype up the situation by using Scare Words.

2) The claim that the CAA specifies vaccine specific language

The NAA say in their press release that:

The committee’s action is in direct opposition to…the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

This is quite simply not true. Nowhere in the CAA is that sentence used. In fact, nowhere in the CAA do the words ‘vaccine’, ‘vaccination’, ‘immunize’, ‘immunization’, ‘inoculate’, inoculation’, ‘thimerosal’, ‘mmr’ etc appear. Don’t take my word for it. Download the Act and search for yourself. I guess somehow, the NAA made a terribly unfortunate accident and confused the CAA itself with this Senate discussion _about_ the act. A discussion which has no bearing whatsoever on the legal _contents of the Act itself_ .

3) The insinuation that because _they_ voted for vaccine specific research, that they speak for the majority of the autism community

The NAA’s press release quotes a Ms. McIlwain as saying:

It’s no wonder parents around the country are questioning vaccines when government agencies refuse to investigate legitimate vaccine safety concerns

Safe Minds Lyn Redwood said:

“Advocacy groups and legislators have been marginalized in this process.”

As we’ve seen, legislators have not been marginalised. Certain advocacy groups may well have been. Boo-hoo. Its about time we asked ourselves the question: do these co-called advocacy groups actually accurately represent individual opinion?

In the Summer of 2008, the NIMH asked for public comments about the IACC’s Strategic Plan. This was following the NIMH’s Director Tom Insel statement to Lyn Redwood of SafeMinds during the Nov 21st 2008 IACC meeting:

We’ve received public comments on both sides and comments that make it clear that vaccines have no place in this report.

If one visits the public comments page (see link above) and does a search for the word ‘vaccine’, this is what you get:

Out of 148 total responses, 52 (35%) specifically mention vaccines, asking for research. 18 (12%) specifically mention vaccines, asking for the IACC in various ways to discount the vaccine idea. This leaves 78 (53%) who are so uninterested in the vaccine idea they don’t even mention it.

Or, to put it another way, 65% of responders did not ask for vaccine research.

I think this is pretty clear. When 65% of people who are interested enough in autism to respond to a request for public comments don’t ask for vaccine research then the 35% who do cannot claim to be in the majority, or to hold the leading opinion on the matter.

So lets recap. The re-vote was not unprecedented. It did not go against procedure. The CAA does not mention vaccines anywhere in the entirety of the bill. The majority of people who are interested in autism aren’t interested in vaccine research.

Why is David Kirby grasping at straws?

9 Jan

Once more for the record, I like David. I tried very hard to get to see him in London last time he was over and we’d arranged to meet up for a drink but due to my family situation it wasn’t to be. However, I cannot let that stop me from recalling that we have very differing views on a wide range of things to do with autism and vaccines.

I have noticed of late a tendency for David’s HuffPo blog posts to be more than usually full of ‘if’ ‘maybe’ ‘might’ etc. However his skill as a writer buries these ambiguities and makes them appear certainties. I’m not even sure its a concious thing for David. His need to write well sometimes (I think) obscures a clinical need for precision in such delicate areas as he and I write in.

With that in mind, I recalled a post of his from November 2008 entitled ‘Tom Daschle: Friend to Many Autism Families’ in which he describes Mr Daschle thusly:

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

I think David might’ve been trying to insinuate that Tom Daschle’s nomination was good for the autism/antivaccine community. Certainly however, as with the autism/antivaccine’s belief that RFK Jr would be appointed by Obama, this nomination might not be quite what that community is expecting. As blogged by Orac today, Daschle’s true feelings on vaccinations were spelt out by the man himself:

Immunization is probably as — as sound an investment as we can make in good health. I can’t imagine that we could do any better than ensure that every — every child is immunized, and that we understand the importance of — of broad-based immunization and the tremendous good health that can come from it.

Following that, David made a fairly innocuous presentation from a US Army scientist look much more sinister than it actually was. He claimed that the army listed autism as a possible ‘health effect’ of mercury/thiomersal. It turned out that that was not actually the case.

Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.

After that was the recent debacle when David mixed up Change.org and Change.gov – the latter being a website of Obama. The former a privately owned enterprise for at least the last 2 years. David thought (and committed to a blog post) that Obama had hired pro-neurodiversity bloggers and he imagined a conversation Obama might have with an autism parent:

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

This post made me sad and angry. I thought better of David than that. To say that any of us who do not believe vaccines cause autism do not think it is desirable to help our autistic children is massively insulting. I hope someday David can maybe spend a bit of time with parents who don’t think vaccines caused their child’s autism and see for himself how we help our kids. And maybe an apology might be forthcoming also.

David’s latest faux pas is regarding the latest MIND institute study. In a post entitled ‘UC Davis Study: Autism is Environmental (Can We Move On Now?)’ David says:

Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It’s due to better diagnosing and counting.

The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.

Here’s the full conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes
in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Lets look at that last again:

…the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

And yet David seems to to think its crystal clear. The paper itself also contains some direct and fairly easy-to-check errors. For example:

The inclusion of milder cases has been suggested as an explanation for the increase in autism. Neither Asperger’s
syndrome nor “pervasive developmental disorders not otherwise specified” qualify under the category of autism in the DDS system.

Here is what DDS passed on to me in Summer of 2007. I promised not to attribute the quote to an individual so I won’t, but you can email DDS yourselves and ask them.

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called ‘Autism.’ But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

Hertz-Picciotto might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

Truth is that a lot of Hertz-Picciotto 2009 is simply wrong. For an extensive overview of why, please read Joseph’s technical takedown from which I’ll quote his conclusion:

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about “milder” cases. In the end, I don’t think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there’s a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I’ve suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

David closes his latest error prone piece with:

But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.

This is a prime example of bad science leading the media. David has reported on a paper that has made fairly bad errors and taken them at their word. Sadly, this sort of thing will only continue as long as institutions like MIND (controlled by a man who is dedicated to proving vaccines cause autism) churn out error strewn papers.

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.

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