Thursday, December 20, 2007

An Exhortation

In case you haven't had enough calls to action recently, what with the Ransom Notes campaign and all, I've got another one for you.

Yesterday I received an email notification from the NIH (National Institute of Mental Health) Autism Listserv. This email was an RFI (Request for Information) for the autism community to make recommendations for future autism research directions. Here's the email:

"The National Institute of Mental Health has issued a “Request for Information
(RFI): Research Priorities for the Interagency Autism Coordinating Committee
Strategic Plan for Autism Spectrum Disorders (ASD).” Please see the
official notice for more information and instructions for responding by the
deadline of January 4, 2008:
The purpose of this time-sensitive RFI is to seek input from ASD
stakeholders such as individuals with ASD and their families, autism advocates,
scientists, health professionals, therapists, educators, state and local
programs for ASD, and the public at large about what they consider to be
high-priority research questions. Please forward this email or share this
request with any individuals or groups who may be interested."

Please note the deadline - January 4. This is a mere 15 days from now, so a sense of urgency seems appropriate at this time.

If you follow the link provided in the email, you will see a bit more information about the RFI. Some key phrases stand out:

"The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research."
Yes, that actually stated that there is a legal mandate driving this process. Though this circumstance is accompanied by its own set of problems, I think it is clear that some conclusions will be reached and a plan will be laid out. If you, like me, have any concerns that the plan may not end up to be what you envision as being supportive of or appropriate to autistic people, now is the time to voice that opinion.

"In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input."
Huh? They had a meeting already? Well don't worry, a very strong and appropriate statement was delivered by Kristina Chew that hopefully helped to frame some of the decisions that will be taking place. Thank you for your timely and well-chosen words, Kristina.

"To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:"
The 4 areas are Treatment, Diagnosis, Risk Factors, and Biology. While it is in all likelihood too late to have input on what the 4 areas are, it is certainly the right moment to influence what direction these 4 areas will go in. If you believe that vaccine studies are not a fruitful way to spend autism research dollars, say so now or risk Risk Factors being all about that. If you are an autistic person who has benefitted from the GFCF diet and believe that research will result in the same benefit being granted to some other autistic people, please let the IACC know that now. If you feel that Asperger's Syndrome and Autism Disorder belong in different diagnostic categories, argue why you feel that way. If you think the JRC is an abomination, perhaps a recommendation to the IACC about researching electroshock therapy is in order.
Notice that the RFI also allows for the category "Other areas of research". Perhaps this is where you want to step in and try to make a difference in how future research directions will be established.

Conveniently, contact info for Diane Buckley, Office of the Director of the National Institute of Mental Health, is also listed for the purpose of supporting inquiries.

I have followed any number of autism debates over the past couple of years, and am acutely aware that virtually all elements of the autism community feel under-represented. Virtually all feel strongly that research should be oriented a certain way. Well, guess what folks? Now - NOW! - is the time to exert your individual and collective influence on the process. I exhort each person, each 'stakeholder' in the autism community, to take some time in the next two weeks to organize your thoughts and present them to the NIH.


Another Voice said...


I agree that the four areas are most likely set, however these are fairly broad categories. I am sending a response directed at treatment but not in the medical sense. I feel that we need to find ways to reduce the cost of delivering services in education, while increasing the quality and consistency on a national basis.

Chuck said...

Remember, RFI must contain information that is within the scope and responsibility of the institution that is requesting the information. Submitting information concerning Department of Education (DOE) is not pertinent to NIH functioning and will be routinely dropped from the NIH RFI final submission. Welcome to the US bureaucracy.

María Luján said...

Hi Chuck
Do you think that also research on educational methods for ASD considering sensorial integration differences (such as TEACH and other improved ones) would be in the category of information concerning the DOE?
Thank you in advance

Another Voice said...


Thanks for the heads up, and yes, responses outside of NIH scope may very well be discarded. However, the group has been portrayed as an “inter-agency” coordinating committee. There is a federal member, Gail Houle Ph.D. who is an associate division director at the Department of Education. Since DOE is part of the committee there may be a chance of being heard.

Chuck said...

Being a former “beltway bandit” with experiences in multiple departments, I can assure you that these submissions will be vetted by NIH staff that has very restrictive tunnel vision with job security and department superiority as their primary drivers. This is a completely bipartisan problem.