Tuesday, June 16, 2009

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.

20 comments:

Eric said...

Wow!I am excited at what you will be doing, it's wonderful that so many are researching autism and Aspergers. My main concern, as is yours, is early detection. I want to see kids get tested as early as possible to be able to deal with the pre-teen/teen years of 11 to 13 where the worst bullying normally takes place. As a child, I found that kids are normally more forgiving of any differences when you are around the K-3 years of school, but can be brutal during the primary years into middle school. Early testing can be so beneficial at not only helping the child affected to deal with life, but can be an eye opener to the people involved with that kid's development, and that does include his/her peers. I would love to see a program developed to teach students about our lives, and how to be more accepting and helpful to children who have our diagnosis. If I could help one child to avoid the bullying and harassment that I received, it would be a huge blessing. Thank you again John for all that you are doing, I weep at the joy I feel that hopefully soon, kids will be able to thrive growing up with our diagnosis instead of receiving ridicule and bullying. Woof!

Bobby D said...

John, good to hear you're on the NIH panel. I hope the other panelists are highly receptive to your views. I would have to agree with the thoughts regarding early diagnosis. If I had this sort of early identification of Asperger's, my life would have been much better. As it is, let's come to a meeting of the minds as to the most effective ways to resolve this issue. Best wishes to you on this matter.
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).

Rana said...

I'd definitely be curious about a genetic marker or link. My son was diagnosed with Asperger's in April (he is 9). My brother has Williams Syndrome, and there was a study done at a college in Virginia way back that my brother was a participant in to find similarities between Williams and Autism (there are quite a few). That being said I see things in myself that make me wonder if I have a mild case of AS as well, and my father has now been questioning it...so we see a patter of sorts!

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!!

John Elder Robison said...

Rana, I too believe there is a "look" to autism; indeed I wrote a story on that on my Psychology Today blog just yesterday.

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.

Kim said...

Hi John,
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!

spunkykitty said...

early detection... and help for the poor...

great job, john and all the best with ur voting!

John Elder Robison said...

Early detection is definitely included. Help for the poor is kind of outside our scope, though.

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 .. ..

Michael said...

John, I am thrilled that you are selected to review and help decide what research proposals will be funded. Your perspective and range of experiences will add a valuable dimension to the reviewers. Any "training grant" money in there? Would be great to provide stipends to individuals needing practicum or internship hours who are in qualified Masters programs. If I can ever help in any way, give a call. You know where to find me.
Mike

Darcey said...

What a fantastic opportunity you have! I can't wait to see what's next in this ever-changing field.
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?

Kat said...

It's a big responsibility you have for sure. I know you'll be thorough and fair. I think they are lucky to have you on board.

John Elder Robison said...

Darcey, the phrase "cure autism" does have negative connotations to many of us because we see it as a negative commentary on our very being.

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.

Kanani said...

John, I'm leaving you a MEME on my blog. Will follow up on this later my friend.
MEOW

Kim said...

I wonder what it will take for adult Aspies to understand that when a mom like me wants to "cure" autism, she is certainly not talking about articulate, verbal, functional, interesting people as those found on blogs and in everyday life. A mom like me is talking about "curing" children who scream all day, who cannot potty train, cannot communicate basic needs, is in constant danger if not watched. It's apples and oranges. But what will it take for you guys to stop taking that personally? If I thought my kid would grow up like you guys I'd just sit down, breathe for the first time in 5 years and go on with life. But it's not looking good, you know? My kid, growing up to have in depth thoughts that he's able to communicate clearly online, have a job, relationships? Not unless I try every treatment in the world to "cure" his issues and get him better. Please, tell me what it will take?

John Elder Robison said...

Kim, I think people are getting hung up on terms like "cure autism."

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.

Retriever said...

How to help families. We love our kid, but this has all but destroyed our family.

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.

Kanani said...

I loved being on grant review boards. I always felt I learned so much about a given community and expanded my circle of friends and knowledge.

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.



.

John Elder Robison said...

With most studies I have read, the goal of genetic research is to accomplish early or better diagnosis. It's done on kids, not moms, and it' not meant as a precursor to abortion.

I have to go but will write more later

Kanani said...

John- You are correct. But these are always the types of questions that come up with any type of genetic research. Big, big questions, but I do think that being able to confirm a marker can lead to greater treatment protocols and alleviate some of the shadows existing now.

Kanani said...

One more thing, John, Amid your 100's of proposals, if there is one to look into the percentage of the prison population that has Aspergers, I think this could also provide valuable insight for therapists to help strengthen treatment options to avoid a negative outcome.

kyra said...

good luck, john. what a fantastic opportunity to weigh in on some of these research proposals. although i think looking at markers for early diagnosis is important, i wish for more money spent on providing services to kids and teens and adults who need it for quality of life issues. that's the key. research takes a long time and is expensive. meanwhile, right now there are families clamoring for help.