The Combating Autism Reauthorization Act recently passed in the U.S. House of Representatives. The next steps are approval in the Senate and, should that happen, signing by the President. Mr. Obama has indicated that he will sign. The senate, however, is a different story.
Disability Scoop discusses this in Senate Republicans Move To Derail Autism Act.
Just hours before, however, a clash on the Senate floor revealed fresh opposition in Congress to the measure. When the bill’s sponsor, Sen. Robert Menendez, D-N.J., called for his colleagues to give unanimous consent to the autism legislation, a group of Republican senators objected.
“All of us who object support autism research… but it makes absolutely no sense for us from where we sit to try to play scientist and physician,” said Sen. Jim DeMint, R-S.C.
It’s politics, so I don’t expect the short sound-bytes to be logical. The CARA doesn’t make legislature “play scientist and physician”. It does set up an infrastructure to plan for the research priorities, using researchers and stakeholders for input.
Another paragraph from Disability Scoop:
In addition to opposing condition-specific legislation, DeMint, who was joined by Sen. Tom Coburn, R-Okla., in speaking against the bill, said the measure was not necessary in order to continue current research programs which are funded under other appropriations bills.
Again, let’s consider what actually happens. The Combating Autism Act, and the re-authorization, don’t appropriate funds. They authorize the appropriations. Simply put, they are a plan for what will be authorized. But the Act doesn’t commit congress to make the appropriations. Consider it a statement of intent. A promise.
The Washington Times has a story: Standoff threatens autism research funding. This includes a statement by Senator Tom Coburn:
“What we are opposed to is tying the hands of the researchers and the directors at National Institutes of Health and telling them what they should do and how they should do it.”
I find this odd on two counts. Again, the Act does not tie the hands of people at NIH other than in the formation of the IACC to create a strategic plan and advise the Secretary of Health and Human Services.
As to telling the NIH what to do, what areas to focus upon. Well, there’s the National Cancer Institute, the National Eye Institute, the National Heart Lung and Blood Institute…you get the idea. The NIH has already created specific focus areas. The Combating Autism Act is not out of place in the way the NIH is run by congress.
The Times quotes Rep. Michael F. Doyle:
Mr. Doyle said he spoke with two senators who had concerns about the bill and that he “did not have an indication that there was an effort to block this thing permanently.”
If accurate, this places the current stall in the category of “politics”.
Left Brain Right Brain 
Objections to the bill have come from both sides of the aisle. Some congressmen feel disease specific bills in general are not appropriate and that it is not appropriate for congressmen (the vast majority of whom are neither physicians nor scientists) to do anything but authorize a lump sum for the NIH. They object to designating the money for “autism” research because they feel the scientists at NIH are the ones who should decide what diseases to research, not them. Thus, while they support autism research (or claim to), they are concerned about the disease specific nature of the bill.
I’m not agreeing with this position; just trying to explain why the quotes seem so strange.
Alison Singer,
thank for that.
You can speak to this much better than I, but it strikes me that the real heart of the CAA (and CARA) is not the funding. As noted above, it is really an authorization to appropriate funding, not a full commitment to funding. Again as noted above, what the CAA does, through the IACC, is set up the system whereby the NIH *can* plan and decide on research priorities for autism.
Again, you can speak to this better than I, but from what I see the IACC doesn’t take a “here’s our budget, how do we spend it approach”. Budgets are the last part of the planning process.
Appropriating funding in a separate spending bill, as suggested in one of the stories, would not be the best approach in my view. It would leave out some sort of structure to focus and plan autism research. Yes, we have to take into account that the people at NIH are excellent and can direct research strategies. But the message being given in these stories makes it sound like they aren’t. The IACC roster is full of high level NIH (and other government agency) personnel.
Alison is right but it also needs to be stated that the CAA was crafted to specifically to stimulate a targeted, disorder specific response to autism because the NIH and others were spending next to nothing on autism. Absent an effective lobby, which the IACC and constituent members are for us, there was no incentive for Federal dollars to flow into autism. No $ = no good scientists. It was a considered a career dead end prior to the CAA. Instead, the landscape consisted of parent groups funding a handful of clinicians and a couple of researchers on shoestrings. Academia wanted nothing to do with autism. Some still don’t but it is improving, as evidenced by the number of published peer reviewed papers in the last five years and attendence figures at IMFAR.
I don’t want to see us go back to the bad old days. We may not revert to the 2005 baseline but it’ll be ugly for autism research if CARA fails. Other disease groups want the money and have very powerful lobbies. Removing our advocates from the table will definitely leave a mark.
Do you have any peer-reviewed evidence in justification of that equation? The massive discoveries of Galvani, Faraday, Babbage, Tim Berners-Lee, et al, which enable you to read and write this here had little to do with huge research budgets.
Any genuine committed scientist is not looking to create a career in a field but to solve all the questions and then move on elsewhere. Big gravy-train funding of a field encourages an profiteering industrial approach obsessed with generating more research opportunities and drowning out the genuine science with career drivel rather than getting on with resolving the questions. There’s already too much sign of that going on in autism “research”, not least the Hertz-Picciotto blood mercury paper which hides away the fact of its utter uselessness and irrelevance to causation in its second-to-last sentence(*) while its title and abstract are paraded all over the “reputable” autism sites to deceive the public who fund it.
*(“This report did not address the role of pre-natal or early-life Hg exposures in etiology of autism.”
Having thus fooled everyone that mercury is not involved they can then spend the next decade of their careers on a safely wild goose chase for the mythical other factors confident that they won’t find the real main cause in all that time.
@newthinker:
In the Omnibus Autism Proceedings before Vaccine Court in the U.S. an expert on Mercury Poisoning and Autism (I forget her name, sorry) showed that the two were markedly dissimilar. The MMR-Vaccine/Autism link has been looked at and utterly discredited.
newthinker, which vaccine in the present pediatric is only available with thimerosal? The last time I checked at least four of nine influenza vaccines were thimerosal-free.
The autism/mercury train left ten years ago. First by the creation single dose versions of the vaccines, and then years of research in multiple countries showing no relationship between vaccines and autism. It is time to stop going on about that and do real research on autism, especially effective educational therapies and accommodations.
Perhaps you should have called yourself “oldthinker.”
“…it makes absolutely no sense for us from where we sit to try to play scientist and physician,” said Sen. Jim DeMint, R-S.C.
demint constituents South Carolina Poll Results (sept 2011)
say…
BO is a socialist: 74%
BO is a Muslim: 30%
BO not born in US: 41% before certificate
BO not born in US: 36% after certificate
it makes absolutely no sense…
stanley seigler
[Julian Frost say] The MMR-Vaccine/Autism link has been looked at and utterly discredited.
tho agree…one may want to refain from over the top hype…(eg, utterly discredited)…consider:
“…an international team of scientists said on Thursday they had recorded sub-atomic particles traveling faster than light…”
http://www.reuters.com/article/2011/09/22/us-science-light-idUSTRE78L4FH20110922
autism intelligence travels faster than the speed of light…
stanley seigler
What a sad site this is. Bye.
“What a sad site this is. Bye.”
I’m sure you can find a nice safe site where you’ll never heard a dissenting word to disturb your delicate belief system. Best wishes.
Dadvocate;
You wrote the following:
‘I don’t want to see us go back to the bad old days. We may not revert to the 2005 baseline but it’ll be ugly for autism research if CARA fails. Other disease groups want the money and have very powerful lobbies. Removing our advocates from the table will definitely leave a mark’.
I don’t know where you got the information for this statement, but it is dead wrong. There is no stronger lobby competing for NIH funding than the autism lobby.
For example autism and intellectual disability get about the same amount of funding from the NIH even though intellectual disability is 9 times more common than autism. Cerebral Palsy which is also commoner than autism gets half the NIH funding than autism gets.
The funding for autism and ADHD has skyrocketed in recent years and the false epidemic of autism, attenional disorders an chilhood bi-polar disorder have everything to do with these funding levels. The charge of the false epidemics of autism, ADHD and childhood bi-polar disorder is not made by some internet blogger. It is Dr. Francis Allen who was the editor in chief responsible for the introduction of DSM-IV (1994) who is making that charge and he taken responsibility for what he calls the false epidemics of auitsm, ADHD and childhood bi-polar disorder.
http://www.psychiatrictimes.com/display/article/10168/1507812?pageNumber=2
http://neuroskeptic.blogspot.com/2010/12/what-diseases-get-researched.html
RAJ wrote:
“For example autism and intellectual disability get about the same amount of funding from the NIH even though intellectual disability is 9 times more common than autism”
Current estimates for autism/asd are about 1% prevalence.
Are you claiming that the prevalence of intellectual disability is 9% ?
Seems unlikely.
Perhaps you could clarify how you came to the 9 times statement. If you are somehow trying to separate autism from asd, how did you divide the funding?
“false epidemic of autism”
I must apologise, as, on reflection, “sad” doesn’t come close to describing this site. “Tragic” more like.
As someone who keeps pretty close track of the progress in autism research, my impression is that there is tremendous progress. It may not look like that to those who are not looking at the whole picture, but it is correct.
The largest progress is in understanding the magnitude of the problem and understanding what is not known about it. Trying to measure progress toward a goal is difficult, when you don’t know how far away the goal is.
If the goal is to travel to someplace unknown, finding out if it is 1 meter, 100 meters, 100 kilometers, or 100,000,000 km makes a big difference. Until you know how far away it is, finding a path that will take you there is difficult. An honest researcher will tell you they don’t know. A quack will make up something to sell you snake-oil.
I don’t think that most researchers appreciate how complicated the problem is. I think they are getting there, and there will be a lot of appreciation in the next few years when the next few very large GWAS find essentially nothing (my prediction).
The biggest obstacle to progress comes from latching onto an “answer” that happens to be wrong. That is what the “refrigerator mother” idea, the “anti-mercury” idea, the “anti-vaccine” idea did. The “everything is genetic” idea will be the next to fall.
The progress that is being made now is progress in the fundamental understanding of neurodevelopment. It is unavoidably necessary to understand neurotypical neurodevelopment before the more complicated non-neurotypical neurodevelopment can be understood.
It will not be possible to understand “autism” as something that is “sprinkled onto” a neurotypical brain without first understanding the neurotypical brain. I appreciate that this perspective is difficult to understand because being neurotypical “just happens”, so “it must be simple”. No, there is nothing about any kind of neurodevelopment that is simple. Looking only for simple answers will ensure that an answer is never found.
A major heuristic of science, as articulated by Einstein, is that “things should be made as simple as possible, but not any simpler.” He also said: “Any intelligent fool can make things bigger and more complex… It takes a touch of genius – and a lot of courage to move in the opposite direction.”
The NIMH under the direction of Thomas Insel is working on the fundamentals which only now has technology allowed researchers to do (and which we still really don’t understand even what those fundamentals are, let alone how they interact). When good research is done, progress is made. That is the definition of incremental progress, work that adds to a larger body of understanding.
My expectation is that there won’t be much apparent progress until there is a paradigm shift and then things will move at warp speed. I am trying to help that along, but it is difficult, even for me 😉
newthinker:
Why? Please explain in detail.
“Why? Please explain in detail.”
For every ounce of knowledge and understanding that I/others post to this site, ten ounces of “expert” ignorance and misunderstanding come back. That might not matter if I did not have plenty better things to get on with urgently. Bye.
Firstly, newthinker, you were asked to explain in detail. You haven’t.
Secondly, don’t let the door hit you on the backside on the way out.
Sullivan if you actually bothered to read the link I provided, it stated:
‘Autism is very popular; it gets the same amount of research as intellectual disability aka mental retardation (ID/MR), even though ID/MR is 9 times more common (0.65% vs. 5.5%)’
That’s not my claim, it is based on extensive research by Dr. Dorothy Bishop who has published many research articles on autism and serves on editorial boards of peer reviewed medical journals devoted to developmental disorders of childhood.
She also is among those autism researchers who believe the autism is being over diagnosed.
http://www.guardian.co.uk/science/blog/2011/jun/07/how-common-autism-diagnosis
The 1% prevelance claim for autism is based on rather dodgy and criticised data published by the CDC or by groups like Baron-Cohen’s group in the UK who considers any child or adult who doesn’t have a Ken or Barby personality as having an ‘autism spectrum condition’. There isn’t a 10 year old boy or girl who enters Baron-Cohen’s clinic and might be quiet, sensitive and assuming where Baron-Cohen doesn’t reach for his ever ready rubber stamp of ‘autism spectrum condition’.
But I thank you for attributing the statement to me, but I cannot accept your attribution since the research was published by a respected autism researcher.
RAJ,
thanks for that link. I will note that in the app I use to follow comments here, I don’t see links.
That said, is this really the level of data that is adequate for you? 0.65% is low as an autism prevalence. You can redefine ASD’s however you like, but don’t expect the rest of us to join you. Even with your own definition of ASD, you don’t have actual data on prevalence. That is unless I missed your paper on the subject?
Your prevalence for Intellectual Disability is also off. It is closer to 1%, as I would guess you are aware. But, go ahead and quote some authority.
Is there some reason why you feel the need to act like Prof. Baron-Cohen’s group is somehow represented here? If you wish to criticize him, send him an email. Or wait until the discussion is focused on him.
newthinker:
So you admit that you are a sock puppet. That does not explain why you think that research into more relevant areas of autism is tragic.
This really has to be one of the most pathetic places in the whole of the webosphere. Makes even AgeOfAutism seem sane by comparison.
Again, you have to explain in detail why this is a pathetic site. You have only ever posted on this article, which is about legal issues in the USA.
RAJ I am still waiting for you to explain what your issues/problems are with the current DSM criteria for ASD’s.
Apologies if I missed it.
The do a lot of waiting here. They’ll still be waiting for genuine proof of a genuine autism increase even when the levels reach 1 per 1 children.
newthinker, what does that have to do with the American Congress authorizing the allocation of funds to autism research?