Giving autism research a push in the right direction

[Guest guest]

http://neurodiversity.com/weblog/article/117/

I have been told that the amount of funds that are supposed to go into

autism research now that they have the " combatting autism act " passed

is massive compared to what other researchers are getting these days

(everyone got their funding cut back because of the war).

It has been suggested that the director of the NIMH along with

Shestack (who was part of a special panel that was supposed to tell

the gov't how to research autism) basically " conspired " (not in the

legal sense) to get the mercury parents all in a frenzy over passing

the the CAA by including language about funding anti-vaccine type

research because the Hg parents had so much energy and time to harass

congress into passing the bill, knowing all along that they (CAN and

others) would pull the rug out from under the mercury parents at the

last minute.

Anyway, whether that is true or not, there's this chunk of money that

is mainly to be used for doing research in how to end autism, wipe the

scourge off the planet... " kick it to the curb " as Mrs. Bob says.

If all the online autistics would contact the NIH with some input into

how they'd like to see that money spent, it could make a big fat

difference.

http://neurodiversity.com/weblog/article/117/

It is my understanding that some bloggers (not me) are working on a

way to simplify the instructions that are in Kathleen's blog linked to

above. If you want to get a jump on it, follow the instructions there

and email or fax or whatever the NIH and tell them how you want the

research to go.

The instructions are a little complicated, but you can just get the

email address some basics and even if you send them a short note

saying, " Dang it! I'm sick of all the 'wipe out autism' talk " or

whatever... make it as simple or complex as you like, professional

might get more attention, but non-professional messages must be read

and counted. You don't need to have a degree or be associated with

anyone. Just tell them what you think. They have to save the

messages as representing the voice of the people.

I think the link to Kathleen's blog needs to go on all the

Aspie/autism type boards/listservs you can think of. There's a

deadline January 16, 2007. Here's the basic advice from Kathleen's blog.

" Here are some tips for ensuring that your comment will be entered

into the public record and considered by the IACC.

1. Respond and send comments via email to iacc@....

2. The email subject heading should include " Public Comment on

Draft: Evaluating Progress on the IACC Autism Research Matrix. "

3. Respond by 16 January 2007.

4. You can either attach your comments as a text file or include

them in the body of the email. In either case, start with a title,

underlined, repeating the email subject: Public Comment on Draft:

Evaluating Progress on the IACC Autism Research Matrix.

5. Indicate that you're responding to NIMH's request for public

comments as described at http://www.nimh.nih.gov/autismiacc/index.cfm.

6. Briefly and clearly identify yourself and your interest in this

matter, e.g., " I am an autistic adult; " " I am the parent of …; " " I

work with … " If you are a member of an organization, indicate whether

your comments are on behalf of the organization or represent your

opinion as an individual. If you write on behalf of an organization,

briefly describe it, and identify any relevant conflicts of interest.

If you are one of the rare individuals who might have conflicts that

need disclosure, disclose them.

7. Keep in mind that public comments are " public; " while NIMH may

not post them online as the FDA does, any U.S. citizen can retrieve

comments under the Freedom of Information Act (FOIA).

8. Generally confine your response to the contents of the Draft:

Evaluating Progress on the IACC Autism Research Matrix. Include page

numbers from the draft report when you refer to specific passages in

the report, or when you quote from it. Both the contents of the report

and the membership of the Committee that drafted it are fair game for

comment.

Evaluating Progress on the IACC Autism Research Matrix, is available

online as a .pdf. The text of the draft report follows. "

If you think that " curing autism " sounds like eugenics and think they

ought to be more respectful of autistics, please tell them so.

Camille