The NIH and autism research; John goes to Washington
As some of you know, I was named to the public review board for the National Institutes of Mental Health, to review and vote on grants for autism research. It’s a real honor to be invited, and I take the responsibility seriously. Therefore, I’ve been busy this last little while, reading the current batch of 100+ proposals. I head to Washington this Thursday, to discuss and vote. You’ll be able to read the results of our meeting on the recovery.gov and nih sites as soon as they are ready.
Comments
FYI, I am active in a social group of young adults with Asperger's here in St. Louis. The group is WAWWA (We Are Who We Are), organized by the Judevine Center for Autism. WAWWA has monthly, early evening get togethers (recent ones included painting pottery and attending a celebrity basketball game).
Care wise I know the general population would like access to services as much as possible without the immense cost there seems to be, (and yet discrepancies by region/population). Not sure that would fall under this but is a consideration.
Good luck! I know you'll be working hard!!
However, the step from a look or a behavior to a gene is beyond the current state of science. Still, it's a goal.
Your comments about access to services certainly have merit but my NIH work is limited to research grant funding. Community outreach and treatment programs are funded elsewhere, and I'm not involved in those. At least, not yet.
Congratulations! What an important honor.
In my opinion, there's just too much of a problem stemming from parents blaming vaccines, and then seeing improvement when treating for vaccine damage. This angle just cannot be ignored.
Good luck!
great job, john and all the best with ur voting!
One way in which science can help the poor (and we do this) is by developing therapies that don't require zillion-dollar machines or othe rcostly facilities.
Sometimes you do research and figure something out with a ten-million-dollar medical imaging lab, and when it's all done, you can print a chart and instructions and people can use the results of your research in an adobe building in a town with no electricity.
But all too often it takes powerful equipment to get there in the first place.
The TMS research I've been involved with in Boston is a good example. There, the scientists uses $$$$$ equipment to make the discoveries, but we are ending up with simple tests a school psychologist could do with clay balls and a marker board to measure brain plasticity.
Who'd have ever guessed such a complex parameter could be measured in the field? Yet the brain imaging tools are showing us the way.
And from where I sit, that's the best thing we can do because it makes the fruits of the research avaialble to anyone without cost barrier.
However, that's just one example. There are plenty of others where the $$$$ machines will always be needed.
Sorry for a rambling answer .. ..
Mike
Personally, I hope more can be done to educate the nuero-typical folk as to what it truly is to be on the spectrum. I hear talk all the time (and recently read a newspaper article) about "curing autism". I almost feel hurt when I hear that idea. I think many people have got the wrong idea. What do you think?
However, this research is aimed at much more specific things.
For example, no one would object to learning how to diagnose autosm in a 6-month-old, if such can be done.
Few adults would object to learning how to overcome a problem with coordination, either, as an example. If a piece of NIH funded research showed how to do that, it would be great.
Research like this is aimed at solving very specific problems.
MEOW
If we focus on a specific goal, like this: I want to develop a therapy that will allow my daughter to hold a regular conversation with another kid.
That is a goal anyone can embrace. There are no negative connotations to that, and I think that sort of thing is in truth what moms like you hope for.
It's also the specific goal of a number of researchers, including those I work with in Boston.
Comorbidity and genetic stuff interest me.
Also, long term effects of the meds that kid has needed to control violence and agitated behavior, despite two years residential treatment and six years TDP.
Exhaustion of parents, siblings traumatized, finances depleted, and future grim for the entire family because of the kid's troubles.
I think the idea of finding a genetic marker is interesting, and I think some gains have been made in this way. But would parents choose to abort their children? Or would a parent choose not to have children if they knew they had the marker? These are questions that are difficult to ask and answer, but I think valid. However, knowing an autism gene exists might lead to better treatment protocols in the future.
Brain imaging. I think this is really important. Unfortunately, it's also expensive. Let's say someone went through the psychological evaluation and it were part of the protocol --this might bring the price down making it more affordable.
I'd like to see more emphasis on generational identifiers of Aspergers. Meaning, not only early ID, but were there others in the family --aunts, uncles, grandparents, cousins, that exhibited the same? And if looking into their past, can we see examples of sheer brilliance and success, as well as unhappiness and failure. And what can we learn of this? What are the many factors that differentiate those who find success (like John) and those who struggle?
But I think the end result is that whatever we fund as taxpayers, must produce tangible results to reach all children, teens and adults on the spectrum.
And I do think that Kim has a valid point. "Cure Autism" has a wide range of meaning for different parents and individuals. I think the common image of "curing" something is like a shot or a pill and it goes away. For some we might be talking about curbing the anxiety, depression and rage that sometime accompany those on the spectrum. For others, it might be as what Kim has --basic functioning. For this reason I do think that "Cure Autism" is a rather large term for a spectrum that has many divisions and specifics.
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I have to go but will write more later