Archive | February, 2009

Stimulus package update

7 Feb

I knew I was running the risk of having my last post become obsolete immediately. Had I checked the news before I hit publish, I’d have seen that reports were out that the U.S. Senate had already passed their version of the bill, making it obsolete even before it was public.

OK, remember your civics classes? Or, if you are not a U.S. citizen, remember all those times that the U.S. political system seemed utterly confusing?

This is one of those times. (But, bear with me…or skip to the bottom: we need your help!)

First the House of Representatives passed their stimulus bill: H.R. 1. After they finished, they sent the bill to the Senate. The Senate, being a bunch of opinionated people, get to muck around with H.R. 1 and rewrite it. What just happened today is that the Senate passed their version of the Stimulus package. This is S.A. 98. In the process of rewriting, they added, oh, about 400 amendments to the bill. I’d love to tell you what they are, but they’ve come in so fast and furious that the government’s website hasn’t been able to catch up yet.

Many of the amendments say:

AMENDMENT PURPOSE: Purpose will be available when the amendment is proposed for consideration. See Congressional Record for text.

Here’s one that seemed good to me,

To provide an additional $6,500,000,000 to the National Institutes of Health for biomedical research.

Yep, $6.5B, with a B. That version got shot down…but this version (which appears the same in the short summary) got approved. Like I said, the U.S. Political system can be a little strange.

OK, it’s late. I don’t want to read through another 300 amendments. Especially when the amendment that has the cut to IDEA is buried in a quick summary like “to eliminate unnecessary spending”.

The word on the street (and probably somewhere on the Thomas.loc.gov website) is that the IDEA funding increase was cut down.

Does that mean the struggle is over? Hardly. It won’t be easy to get the funding level increased again, but keep in mind, the Senate and House versions of the bill are not the same. Before they send it to President Obama, they have to reconcile the two bills.

Or, as one news story puts it:

House Majority Leader Steny Hoyer said negotiators from the House and Senate would begin crafting a compromise bill on Monday, with the goal of sending legislation to President Barack Obama by the end of next week.

So, there is a chance for the the House to assert its version of IDEA funding.

In other words, now would be a good time to call, email or fax your member of congress or senators.

IDEA funding

7 Feb

One of the reasons I was hopeful that Mr. Obama would be elected presidency was his promise to fully fund the Individuals with Disabilities Education Act (IDEA). This is the law which mandates special education in the United States. The original promise is that the federal government would pay for 40% of the costs of special education.

It never happened. I don’t think it ever got to 20%.

That a country like the United States could make a promise to some of those in greatest need and then not live up to the promise is painful for me to admit as an American.

If you’ve been keeping up on the news lately, even outside the US, you probably know that Mr. Obama has a huge (nearly $1 trillion) economic stimulus plan proposed.

What you may not know is that IDEA funding is included in the stimulus plan.

House Resolution 1 includes the following language

For an additional amount for `Special Education’ for carrying out section 611 and part C of the Individuals with Disabilities Education Act (`IDEA’), $13,600,000,000: Provided, That $13,000,000,000 shall be available for section 611 of the IDEA, of which $6,000,000,000 shall become available on July 1, 2009, and remain available through September 30, 2010, and $7,000,000,000 shall become available on July 1, 2010, and remain available through September 30, 2011: Provided further, That $600,000,000 shall be available for part C of the IDEA, of which $300,000,000 shall become available on July 1, 2009, and remain available through September 30, 2010, and $300,000,000 shall become available on July 1, 2010, and remain available through September 30, 2011: Provided further, That by July 1, 2009, the Secretary of Education shall reserve the amount needed for grants under section 643(e) of the IDEA from funds available for obligation on July 1, 2009, with any remaining funds to be allocated in accordance with section 643(c) of the IDEA: Provided further, That by July 1, 2010, the Secretary shall reserve the amount needed for grants under section 643(e) of the IDEA from funds available for obligation on July 1, 2010, with any remaining funds to be allocated in accordance with section 643(c) of the IDEA: Provided further, That if every State, as defined by section 602(31) of the IDEA, reaches its maximum allocation under section 611(d)(3)(B)(iii) of the IDEA, and there are remaining funds, such funds shall be proportionally allocated to each State subject to the maximum amounts contained in section 611(a)(2) of the IDEA: Provided further, That the provisions of section 1106 of this Act shall not apply to this appropriation.

It’s not perfect, but it was a big step forward in funding special education.

But, as Kristina Chew (and others) have noted, there is a push to cut this proposed amount.

Now would be a good time to let your legislators–especially senators–know that fully funding IDEA is the right thing to do.

Take a look at this document–it’s actually a pain since I couldn’t search it. It lists the funding increases for school districts under the original stimulus plan. I picked California since the Los Angeles Unified school district is HUGE. Just to make this point–the stimulus plan would add $90,000,000 to their budget in 2009.

Look up your state and school district here.

This could make a huge difference.

Don’t let them cut this proposed funding. At least, let’s not go down without a fight.

Autistic

5 Feb

This is one of those posts where the idea has been rolling around in my head for a very long time. For whatever reason, I feel the need to finally put it into words.

There is a struggle going on as to whether the word “autistic” is a valid now. As in, “Autistics deserve better”. There is a big push for “person first” language such as “people with autism deserve better”.

I’ll admit, I use both.

I’ll also admit, I think that people with autism deserve to have the vote in how they can refer to themselves and how they want others to refer to them.

Arguments against “autistic” range from silly (“autistic isn’t in the dictionary”) to something I can at least understand, if not fully agree with (“person first language honors the person, not the condition”).

On example of the push for person-first language cam in the last year or so. New York State passed a law requiring person first language in official documents. One autistic I know pointed out to me that groups such as the Society for the Blind or the Society for the Deaf, for example, might not appreciate the idea. Think of changing the name to “Society for people with blindess”. Any reason to do that?

Much of the discussion of “person first” in regards to autism, I am fairly sure, based on the nature of the term “Mental Retardation”. Once we hear “mental retardation”, it is hard to not hear “Mentally Retarded”, “Retarded” or the word that was discussed a lot in 2008: “Retard”.

“Retard” is vile and pejorative. It is an ugly playground taunt that has no place on the playground and unfortunately many adults never left behind. It has tainted the term “Mental Retardation”. Journals now recommend avoiding the term “Mentally Retarded”. Here is an excerpt from the Information for Authors on the American Journal of Mental Retardation (AJMR) website:

When context makes it clear whether an author is referring to people with mental retardation or when it is otherwise unnecessary to refer to intellectual level or diagnostic category, authors should use the most descriptive generic terms, such as children, students, or persons, without using qualifiers such as “with mental retardation,” “with handicaps,” or “with developmental disabilities.” Under no circumstances should retarded be used as a noun. Prepositional constructions such as “students with mental retardation,” or “individuals who have mental retardation’ are preferred over adjectival constructions such as “mentally retarded people,” except when clear communication dictates occasional use of adjectival designations. Because normal has multiple meanings and may inappropriately imply abnormal where it is not applied, this word should not be used. Instead, more operationally descriptive terms such as “intellectually average pupils” should be used.

(emphasis mine)

There is a lot of interesting stuff there. I like, most of all, the suggestion that generic terms (children, students or persons) be used as much as possible.

An interesting thing to note is that if you look on the journal archive page, you will see that starting in 2009, AJMR changed its name to the American Journal of Intellectual and Developmental Disabilities (AJIDD). This is in part to recognize the broader scope of the journal (which includes papers on autism, fragile-x and other conditions). When I first saw this change, I couldn’t help thinking part of the reason is to get away from the term “Mental Retardation” as well and this is confirmed by an editorial in the first AJIDD issue:

The Journal has also changed dramatically over the years, with the issues addressed reflecting advances in technology, the advent of new theories and methods in other fields, and changing societal concerns. These influences have also led to a name change for the Journal. In part, the change has been motivated by a desire to avoid the negative connotations that have come to be associated with the term mental retardation. I fully endorse this change in terminology because it reflects our field’s commitment not only to our science but to the people whose lives we hope to improve through our efforts. Quite simply, the change in terminology is a tangible sign of our respect for, and solidarity with, people who have disabilities and their families.

The phrase I focus in upon is “… to avoid the negative connotations that have come to be associated with the term mental retardation.” (emphasis mine)

You see, it wasn’t always that “mental retardation” held as negative a connotation as it does today. More to the point of this post–we don’t have to let “autistic” become negative.

From my vantage point it seems as though if we say, “Don’t call my kid autistic” or “Don’t call me autistic”, we are creating the negative connotation where one doesn’t exist today. What if “the blind” or “the deaf” had complained years ago? Would we now be cringing when we hear the names of societies for “the blind” or “the deaf”?

I am not so disingenuous as to ignore the major difference between deafness, blindness and autism. Of the three, autism is the one associated with intellectual disability and differences in personality. It is a harder battle to keep respect in the connotations of “autistic” than for “blind” or “Deaf”.

But, I for one am not willing to help make “autistic” a bad word.

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.

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