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mlwear
06-05-2006, 10:48 AM
I'm going to post this in the lounge, also, given the time constraint.
I don't know that I, personally, agree with everything they are asking for in this bill and will still decide if and what I will write. But, I know some on this board would like to see this passed and am giving you the information I received. I plan to research it further before adding my support.

Parents, Grandparents and Friends,
the final push for the Combating Autism Bill
has begun!


We have only two weeks to influence Senators about what we want in the Bill!

Background: As you know, the autism groups in the community wrote and reached consensus on a new Combating Autism Bill in December which was presented to Senators in early January. The plan was to substitute our bill for the old Combating Autism Bill.

Senators have since been working on the language. We have been following their progress with great interest all spring, and have heard that the senators expect to present a new version of the CAA Bill to the HELP Committee in the next couple of weeks.

The next two weeks are critical because members are expected to tackle the most important issues before the end of June.

NOW IS THE TIME TO TAKE ACTION:

- WE ARE CONCERNED that the language the community wants will be removed from the new bill.

- Specifically, we fear the environmental language will get deleted and that the money we have earmarked for the National Institutes of Environmental Health Sciences could be cut.

- It's imperative to get your help right away. We need you to put pressure on the HELP Committee – particularly four Senators – to make sure THE LANGUAGE WE WANT STAYS.

WHAT WE WANT:

We want the Combating Autism Bill to pass the way we want it. Let’s let them know:

- We want the $6 million solely devoted to the NIEHS every year for the next five years.

- We defend the $44 million allocated to Autism Centers of Excellence and NIH Environmental Research Centers every year for the next five years.

- We want the environmental research language to stay in the bill as written:

Autism Centers of Excellence-
'(1) IN GENERAL- In carrying out subsection (a)(1), the Director of NIH shall award grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on autism.
'(2) RESEARCH- Each center of excellence that receives funding under paragraph (1) shall conduct basic and clinical research into autism. Such research—
'(A) shall be conducted in the fields of developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, endocrinology, gastroenterology, and toxicology; and
(B) should include--
'(i) investigations into the cause, diagnosis, early detection, prevention, control, treatment, and cure of autism;
'(ii) research on high-risk infant siblings; and
‘(iii) research on a broad array of environmental triggers which may have a possible role in autism, including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).

- We want the oversight and safeguards language, whereby the autism community has representation on official government committees, to stay in the bill---specifically more representation on the Interagency Autism Coordinating Committee and a newly formed Autism Advisory Board made up of community members and scientists.

- We want to keep language that dictates to the CDC what they could spend their allocated money on. We want the language inserted which reads: “for the purpose of collecting and analyzing information on the number, incidence, incidence trend over time, by birth year, retrospectively and prospectively, for autism spectrum disorder, classic autism, and PDD-NOS, correlates, and causes of autism and related developmental disabilities.”
[[Parents, this will make sure that data reported are comparable over time and that there is no “inflation” in diagnostic criteria to discourage CDC from unreasonably trolling for cases.]]

- In short, we want the autism community consensus bill as written by the autism community groups who are dedicated to treatments and a cure for our children.

WHAT YOU CAN DO TO IMPACT THIS BILL:

We hear that the AAP is actively lobbying behind the scenes to take the environmental language out of this bill. http://www.huffingtonpost.com/david-kirby/doctors-against-research_b_17726.html They do not want NIH to look into vaccines or their components. This is wrong. Autism has been proven to be an environmental disorder. We demand that they look into all environment triggers, including vaccines and their components!

If AAP gets their way, the bill will likely pass with tons of money going to the CDC to count our children but no money going to research that directly treats and leads to a cure for our children. It is time we stand up and let our opinions be known!

PLEASE WRITE, E-MAIL FAX AND CALL THE MEMBERS LISTED BELOW. PLEASE DO THIS ASAP!

continued on next post
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mlwear
06-05-2006, 10:50 AM
HERE IS A SAMPLE LETTER...

Senator Mike Enzi
290 Russell Senate Office Building
Washington, DC 20510

May 24, 2006

Dear Senator Enzi,

I am writing to you today as a concerned citizen and parent of a child with
an autism diagnosis. The Combating Autism Act is critical legislation that
must go forward as currently written if this nation is to begin addressing
the needs of the one in 166 children now diagnosed with autism. Most
importantly, the provisions for funding environmental research must remain
in this legislation if the affected children are to have hope for recovery.

There can no longer be any doubt that exposure to environmental toxins is
the single most important factor in the huge rise in neurological disorders
among America's children. My child, like so many others, was born in
complete good health until the repeated injections of mercury-containing
vaccines began to take their toll, causing loss of previously acquired
speech and motor skills, and severe behavior changes. On six separate
occasions before the age of 18 months, my son was injected with amounts of
mercury greatly in excess of federal mercury exposure guidelines. The onset
of symptoms that eventually led to an autism diagnosis is completely
consistent with that for mercury toxicity.

The HELP Committee upon which you sit will soon be reviewing the Combating
Autism Act. It is imperative that the funds earmarked for the National
Institute of Environmental Health Sciences be left in this legislation.
Without this funding, the most promising area of research for my child and
hundreds of thousands of others will go unexplored. Our legislators must do
the right thing by the children and families struggling with autism and
related disorders by enacting this legislation with the environmental
provisions left intact.

Sincerely,

Your name here

-------------------------------------------------

Phone calls and faxes work best. We suggest you call and fax the first four and fax the rest. Don’t have a fax? Send your letters to Claire Bothwell at claire@nationalautism.org. We’ll fax them for you. In your letter, be sure to tell some of your child’s story and include your name and address on the letter.

Here are the Members we need to target:

(Important four to fax and call – these four are working on the changes in the language)...

Enzi, Mike (R - WY)
290 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-3424
Fax: (202) 228-0359
E-mail: senator@enzi.senate.gov

Santorum, Rick (R-PA)
511 Dirksen Senate Office Building
Washington, DC 20510
Tel: 202-224-6324
Email: http://santorum.senate.gov/public/index.cfm?FuseAction=ContactInformation.ContactFor m&CFID=3081883&CFTOKEN=24059619

Kennedy, Edward - (D - MA)
317 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-4543
Fax: (202) 224-2417
Email: senator@kennedy.senate.gov

Dodd, Christopher (D - CT)
448 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone (202) 224-2823
Fax (202) 228-1683
E-mail: http://dodd.senate.gov/webmail/


Republicans on the HELP Committee:

Gregg, Judd (R - NH)
393 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-3324
Fax: (202) 224-4952
E-mail: mailbox@gregg.senate.gov

Frist, William (R - TN)
509 Hart Senate Office Building
Washington, DC 20510
Phone: 202-224-3344
Fax: 202-228-1264
E-mail: http://frist.senate.gov/contact.cfm

Hatch, Orrin (R-UT)
104 Hart Office Building
Washington, DC 20510
Tel: (202) 224-5251
Fax: (202) 224-6331
Email: http://hatch.senate.gov/index.cfm?FuseAction=Offices.Contact

Sessions, Jeff (R-AL)
335 Russell Senate Office Building
Washington, D.C. 20510-0104
(202) 224-4124 - Phone
(202) 224-3149 - Fax
Email: http://sessions.senate.gov/email/contact.cfm

Burr, Richard (R-NC)
217 Russell Senate Office Building
Washington, DC 20510
Phone: (202) 224-3154
Fax: (202) 228-2981
E-mail: richard.burrnc05@mail.house.gov

Isakson, Johnny R- GA
120 Russell Senate Office Building
Washington, DC 20510
(202) 224-3643
Fax: (202) 228-0724
Email: http://isakson.senate.gov/contact.cfm

Alexander, Lamar (R-TN)
UNITED STATES SENATE WASHINGTON DC 20510
Phone: (202) 224-4944
Fax: (202) 228-3398
E-mail: http://alexander.senate.gov/index.cfm?FuseAction=Contact.Home

Roberts, Pat (R - KS)
302 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-4774
Fax (202) 224-3514
Email: http://roberts.senate.gov/e-mail_pat.html

Ensign, John (R - NV)
364 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-6244
Fax (202) 228-2193
E-mail: http://ensign.senate.gov/forms/email_form.cfm

DeWine, Mike (R - OH)
140 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-2315
Fax (202) 224-6519
E-mail: http://dewine.senate.gov/request_form.cfm
Democrats on the HELP Committee:

Harkin, Tom (D - IA)
731 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone (202) 224-3254
Fax (202) 224-9369
E-mail: http://harkin.senate.gov/contact/contact.cfm

Mikulski, Barbara (D - MD)
709 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-4654
Fax (202)224-8858
E-mail: http://mikulski.senate.gov/contactme/mailform.html

Bingaman, Jeff (D - NM)
703 HART SENATE OFFICE BUILDING WASHINGTON DC 20510Phone:
Phone: (202) 224-5521
Fax (202) 224-2852
E-mail: http://bingaman.senate.gov/Contact_Me/e-mail_form.htm

Jeffords, James (D-VT)
413 Dirksen Senate Office Building, Washington, D.C. 20510
Phone: (202) 224-5141
Fax: (202) 228-0776
Email: http://jeffords.senate.gov/contact.html

Murray, Patty (D - WA)
173 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-2621
Fax: (202) 224-0238
E-mail: http://murray.senate.gov/email/index.cfm

Reed, Jack (D - RI)
320 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-4642
Fax (202) 224-4680
E-mail: http://reed.senate.gov/contact/thoughts.cfm

Clinton, Hillary (D - NY)
476 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
Phone: (202) 224-4451
D.C. Fax (202) 228-0282
Email: http://clinton.senate.gov/contact/webform.cfm



Think Autism. Think Cure

StrictNon-Confo
06-06-2006, 02:09 AM
Whom is represented by the "Autism Community" spoken about in this case?

If it only represents those that have relatives on the spectrum while not including those on the spectrum themselves as part of the community, there is absolutely no way I want to see something like this get passed, because it legalizes (or at least is part of the first steps towards) eradicating the person that is autistic, regardless of their rights and desires: it rips away their rights and treats any that would defy the powers that be to change them as being wrong and perhaps even criminal. Whether others like it or not, those on the spectrum are autistic individuals, not "individuals with autism" (which is on-contagious and non-fatal) as though they're comparable to "individuals with AIDS" because regardless of the cause(s) of how those on the spectrum came to be on the spectrum, it is very much a part of who and what they are, at a far deeper level than some (mostly by someone or other) behaviorally-induced fatal and contagious disease.

The relatives and others seeking "cures" for autism should be well aware that they don't have the right to speak for everyone or to force everyone to conform to their wishes, regardless of whether they're immediate family of those on the spectrum or not, regardless of what leadership roles they fill: people on the spectrum are people that have the moral and (though it appears not often enough) legal right to self-determination of their personal being and what happens to it. If they aren't given an informed choice (note: they must honestly have a choice that they can make, not that of others) with the fullest information known about what's involved with any attempts at "cures" and many "therapies" aimed at making them more "normal" then this is a case of human rights violations: they are being treated as second-class humans, or like animals, being experimented on without their consent.

If you should doubt that, I wish I could refer you to one of my older sisters that was forced through the whims of the state of Michigan against everyone's in my immediate family's will, much to her detriment. She is a testament to the crap that those on the spectrum are put through when younger and unable to legally speak for themselves. She has not forgotten any of it, and never will, either.

If this bit of funding and bill being proposed doesn't have those on the spectrum able to choose to participate of their own free will how they exist, this whole thing should be only left to being typed on toilet paper and flushed into the sewers of history where it belongs, because everything that I can interpret from the wording of all of it indicates that the "Autism Community" refers to the authorities, doctors and relatives of those on the spectrum, and has no room for those most directly affected for life (those on the spectrum) to have any say in the matter. There is simply no way I could support ripping more rights from a group that often has less control over their existence than most criminals in prison do, because no matter how nice the paint job of the walls, no matter how nice the couches, etc. the living arrangements and all that those on the spectrum are often subjected to starting in their youth and continuing until their death as old adults is a decorated prison that they can never escape, because they're not considered competent under the law of self-determination.

If you want what could be considered a shadow of what I'm talking about in regards to this proposed bill and funding, I'd strongly suggest you go out and watch "X-Men: The Last Stand" at the theatres, and substitute the mutants with those on the spectrum: it gets the point across fairly well, with lots of interesting battles, and people on all sides of the topic.

mlwear
06-06-2006, 07:53 AM
Strict, I agree with what you write. I have concerns about this legislation as well and that is why I wrote as a "disclaimer" at the beginning of my post that it was for information for others and that I, personally, did not know if I supported it or if I would write.
I know there are some that read this board that are in favor of funding all or at least some of the items listed in this legislation. I think they should know that it is being considered and they can do what they want.
Personally, I would never send a generic letter to any legislator blindly asking them to support such a complex bill. I think there is a lot to this and much of it is written in a way that requires careful dissection to understand.
I am glad that you added your opinion, which may help some decide whether or not to write. In fact, in may cause some to write and ask that it not be passed. I think given your insight, you should write a letter much like your post to let Senators know that it in your opinion it causes more harm than good. I doubt they have considered that side.
I have thought about that side of the argument, prior to your post and that is why I am reluctant to share my support of some funding of the bill. The "cure" part I believe is most concerning to me. I think there does need to be additional funding, but I'm not sure that they have targeted the areas that it should be best spent. But, this is all my opionion.
I am glad that autism is getting some attention from the government though. We need more social programs, IMO. Many other "disabilities" get far more services and are far less prevelant. Maybe we are turning corner.

mlwear
06-06-2006, 08:07 AM
I tried to edit, but my time expired :mad:

BTW, it seems that the autism community is being defined as caretakers of those with autism moreso than those with autism. I believe a lot of people don't see the big picture, yet. Haven't heard from Lucas in a while, but he and Strict (a few others, too) have made me keenly aware that I am only part of that "community" and really a rather insignificant part. I believe it takes a lot of acceptance and understanding that your child with autism, is a child and not a project. I don't believe a lot of parents get that idea, which is sad. Maybe when their child is older they do. In my son's last two IEP's I wrote at length about this when they asked "what are your dreams for your child (long term)" -- I kept my dreams brief but went on tangents that I was waiting to see what his dreams are and that I didn't want anyone to determine them for him when he was a child...he is person like everyone else and that no one is going to treat him like a project, etc. Sorry to vent a bit here, but I do think that is a significant issue in the "autism community" -- one that I think deserves funding. Parents need to be educuated about this. I really think it would help them feel more at peace, I know it has for me. The TEACCH program is one strategy that respects autistic individuals and I support its use more than some of the more popular --OK, now I am way OT, but this does bug me.