Katie Wright on Autism Speaks' Science Department: A Year in Review

[proverbialwisdom]

http://www.ageofautism.com/2014/01/katie-wright-on-autism-speaks-science-department-a-year-in-review.html

Katie Wright on Autism Speaks' Science Department: A Year in Review
By Katie Wright

Part 1

Almost a year ago Dr. Rob Ring became Autism Speaks new Chief Scientific Officer. I was told that this would be a new era at AS science. Dr. Ring would be introducing more innovative, original research, reducing the amount of learn the signs studies and prioritizing underserved, severely affected people, biomedical interventions and meaningful here and now treatment for all. Sounds good right?

Well first the good news. AS funded an excellent $120,000 study on wandering prevention and another really terrific study on vocational training for young ASD adults. Earlier this year, thanks the very dedicated work of an AS board member, AS also funded a highly innovative study on $100,000 study on PANDAS. .

I allowed the entire year of 2013 to pass without any public comment because I wanted to give Dr. Ring the opportunity to follow through with his proposed reforms. However, we are now eight months into Dr. Ring’s tenure, looking at the most recent slate of grants, the third grant cycle under Dr. Ring’s authority. These grants are largely disappointing and so painfully conservative in nature that I cannot remain silent. I have tried, very hard, behind the scenes, for years, to lobby for better research. No one at AS science is listening. Our ASD children and young adults deserve so much better.

In 2013 virtually ALL the Weatherstone Predoctoral Fellowships were either genetic, early intervention or brain imaging in nature. It is my understanding that Weatherstone was intended to draw innovative young investigators into the field of autism, with special emphasis on the GAP areas in ASD research. AS has saturated the field early intervention and learn the signs research with money. There is absolutely no need to continue to subsidize growth in this area. To a large degree the same problem applies towards the fields of genetics and brain imaging.

Imagine if the NIH were to subsidize more research into the dangers of smoking cigarettes, which is what is happening here.

There are already 1,295 studies on autism and brain imaging/ fMRI and at least 1,000 more in the pipeline. Simons, Cold Springs Harbor and the NIH are MORE than happy to fund this area of research, AS needs to move on. Brain imaging is all about looking at brain inflammation, we need to know what environmental triggers are CAUSING this to happen. There are over 5,000 published studies on autism and genetics. Naturally some genetics research is indeed valuable but why are most AS grants still genetic in nature? Dr Ring knows this is NOT what AS families want. There are 11,000 published studies on the signs of autism. That is e-n-o-u-g-h; there are over 6,000 studies on early intervention. Additionally there are p-l-e-n-t-y of geneticists and brain imagers in the field or autism research. Weatherstone should be subsidizing predoctoral students in the biomedical and environmental sciences fields, neglected by AS and the NIH. Weatherstone could also be supporting researchers to study the biological functions of autism via GI, autoimmune and food allergies. How refreshing that would be!

Let’s take a look a the biggest Autism Speaks grants of 2013: MORE AT LINK.

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Katie Wright is Contributing Editor to Age of Autism. (Her parents founded Autism Speaks)

Comments (54)

[proverbialwisdom]

1. IACC Full Committee Meeting tomorrow.

http://iacc.hhs.gov/events/2014/full-committee-mtg-announcement-jan14.shtml

IACC Full Committee Meeting

Date: Tuesday, January 14, 2014
Time: 9:00 a.m. to 5:00 p.m. Eastern

Cost: The meeting is free and open to the public.
Agenda: To discuss and finalize the 2013 IACC Strategic Plan Update and discuss committee business, updates and issues related to ASD research and services activities.

Webcast Live: VideoCast

http://tacanowblog.com/2013/12/31/if-the-iaccs-strategic-plans-were-ieps-would-they-be-in-non-compliance/

If the IACC’s Strategic Plans were IEPs, would they be in non-compliance?
DECEMBER 31, 2013
By Guest blogger: Carolyn Gammicchia

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The IACC will be meeting on January 14th, 2014 for a Full Committee Meeting to discuss and finalize the 2013 IACC Strategic Plan Update along with other committee business...

This is a very important time regarding matters for individuals living with autism. We feel we are now at a tipping point where more needs to be done as the needs of the autism community are not being met. Across the country, we are seeing many changes due to financial limitations within educational systems. We have seen cutbacks to funding of state-run programs that provide support as budgets are streamlined due to economic hardships, as well as changes in federal programs that provide services and supports to individuals living with disabilities. It is a time of change and a time when many of us feel uncertainty for the future of our children. It is so very important for us to voice our concerns about the lack of movement in meeting the needs of individuals with autism from the IACC. Their past strategic plans have not focused on ensuring that the research being done would transition into applications that will benefit individuals living with autism and their families.

We urge you to watch the last IACC meeting that took place on November 15th, 2013. It was an entire day that addressed the seven questions that are within the IACC’s Strategic Plan and their objectives. For this meeting, a summary was compiled that provided information on the research conducted from the time period of 2008 to 2012. That summary report was available to committee members prior to the meeting and can be found here: http://iacc.hhs.gov/events/2013/111513/iacc_all_compiled_objectives_111513.pdf

You can access the videocast, along with the additional materials for the meeting on the IACC’s meeting page: http://iacc.hhs.gov/events/index.shtml

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You will also notice that the IACC only met three times in 2013 and not all members were physically present at those meetings. Many members were not present at two of the meetings or 66% of those which were conducted. The IACC however does not keep a public record of member attendance which should be of concern, especially when this is a handpicked committee that had several nominations for membership of individuals who would gladly serve on the committee and ensure their attendance. For those interested in learning who attended the three meetings, you can watch each videocast; within the first fifteen minutes attendance is acknowledged...

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The full report along with a summary from the GAO can be accessed here: http://www.gao.gov/products/GAO-14-16

We are discussing this now because we are at a tipping point for our community. We ask that you think about the past five years’ spending of close to 1.4 billion dollars. Do you feel any of this research has been of benefit to your child? Have you seen any changes linked to these federally funded research initiatives that have assisted in providing a better quality of life for your child, support for your family, or to ensure their futures as adults? We are not saying all of this research has been for nothing; it’s garnered some results that most likely can assist, however how is it being utilized to do so? Also the GAO report indicates that 84% of the research done may have been replicated research done via differing agencies. What could have been done with those funds otherwise if that replication did not benefit the research outcomes?

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Link from comments: http://www.ageofautism.com/2014/01/katie-wright-on-autism-speaks-science-department-a-year-in-review.html#comments