IACC comment time: No more procrastinating!

21 Aug

If you are like me you have put off submitting comments to the IACC.

If you are like me you need a reminder.

If you are like me you are in danger of missing the deadline.

Any thoughts about autism research? Let them know. Let them know if you think they are doing a good job or a bad job. Let them know if you think they should put more or less effort into any area.

Let them know here.

You don’t have to answer all the questions. You don’t even really have to stick to their format (if you hit “continue a few times, you get to an they even have an “other information” question).

I was going to try to write this without referencing groups that have opinions I disagree with. However, here is a comment from the Age of Autism blog on the IACC:

Answering their questions made me ill. The idea that their research intiatives include “where do I turn for help” and “what does the future hold”. What a ridiculous drain and distraction from important things such as treatment and prevention.

“What the future holds” is the category for adults with autism. Only 5% of research funding goes towards such research.

Even if the research funding wasn’t that small:

If you feel, like I do, that research into areas such as services for autistic adolescents and adults are important. If you feel that there is room for anything beyond just “treatment and prevention”. If you don’t want your opinion dismissed as “..a ridiculous drain and distraction from important things…”, the time to be heard is now.


It only takes a minute.

8 Responses to “IACC comment time: No more procrastinating!”

  1. Stephanie August 22, 2009 at 00:11 #

    Thank you for this. I’m just starting to get into the whole blogging thing again and didn’t even know about this.

    I’ll have to say this though, I agree with that one commenter about these questions making me ill — though not the reason why. Until the “What does the future hold?” question you could barely tell that they were talking about *people*. The focus on the biology instead of the people made me ill.

  2. RAJ August 22, 2009 at 14:53 #

    The IACC’s budget should be restricted as it always as to fund research into causes, prevention and treatment.

    Your complaint is directed to the wrong feeral agency. The office of Disabilities is charged with what you are complaining about.

    http://www.hhs.gov/od/

    Feel free to lobby the proper federal agency for increased funding for adolecent andadult services, including public private partnerships, with the proper federal agency that is charged with the type of programs that everyone wants to see implemented.

  3. RAJ August 22, 2009 at 14:56 #

    The IACC’s budget should be restricted as it always has been, to fund research into causes, prevention and treatment.

    Your complaint is directed to the wrong federal agency. The office of Disabilities is charged with what you are complaining about.

    http://www.hhs.gov/od/

    Feel free to lobby the proper federal agency for increased funding for adolecent and adult services, including public private partnerships, with the proper federal agency that is charged with the type of programs that everyone wants to see implemented.

  4. Sullivan August 22, 2009 at 15:56 #

    RAJ,

    how are service delivery agencies supposed to work with autistics if no one does the research into the needs specific to autistics?

    I am not saying that the IACC should be *delivering* services or supports to adults any more than you are saying that the IACC should be *delivering* services into causes.

    Your assertion that the IACC’s budget should and has been restricted into causes, prevention and treatment is just plain and demonstrably wrong.

  5. RAJ August 23, 2009 at 16:45 #

    Sullivan:

    Here is the charter for the NIH (May 31st 2009):

    http://acd.od.nih.gov/charter.asp

    “OBJECTIVES AND SCOPE OF ACTIVITIES
    The Committee will provide advice on matters pertinent to National Institutes of Health (NIH) mission responsibilities in the conduct and support of biomedical research, medical science, and biomedical communications”.

    Social services come under the Office On Disability, a sub committee of the Department of Health and Human Services where it belongs.

    • Sullivan August 23, 2009 at 18:02 #

      Sorry, RAJ, you lost me:

      This is the objectives and scope for the “Advisory Committee to the Director”. Maybe there is something like this for the NIH in general, but I’m not going to look for it.

      The “combating autism act of 2005” has as the title “A bill to amend the Public Health Service Act to combat autism through research, screening, intervention and education. ”

      Here is a quote from the law as enacted.

      ‘‘(1) EXPANSION OF ACTIVITIES.—The Director of NIH (in this section referred to as the ‘Director’) shall, subject to the availability of appropriations, expand, intensify, and coordinate the activities of the National Institutes of Health with respect to research on autism spectrum disorder, including basic and clinical research in fields including pathology, developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, and toxicology. Such research shall investigate the cause (including possible environmental causes), diagnosis or rule out, early detection, prevention, services, supports, intervention, and treatment of autism spectrum disorder.

      Services and supports are called for in the law.

      edited to add:

      OK–I looked for it. Here is part of the NIH mission statement
      “NIH is the steward of medical and behavioral research for the Nation. Its mission is science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability.”

      I would have thought you would like to quote the “burdens” part. But, “..and the application of that knowledge…”

      Again–NIH is not there to provide services. Rather, they are there to create the knowledge base to allow others to do

  6. Stephanie August 23, 2009 at 23:28 #

    RAJ,

    It depends on how you define the word “treatment” as well. Right now support services are the only known “treatment” option for some individuals on the autism spectrum and that may never change, no matter how some de-value people with atypical neurological development. Why should research not be conducted on how best to provide for their needs? These are the people who exist now, who have rights now, and they deserve resources to be delivered based on research now.

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