Join the National Autism Association "How Much Longer" Campaign
It's time!
The How Much Longer Campaign is NOW LIVE in NAA’s Action Center and ready for you to send a LOUD message to President Obama, the FDA, the CDC, the National Institutes of Health, the American Academy of Pediatrics, the Department of Education, the Advisory Committee on Immunization Practices and all of America! Your messages will be sent automatically to the above recipients with just a click of your mouse.
How much longer must our children and families wait for insurance coverage, meaningful research, safer vaccines, effective treatment, appropriate services and support, a safe educational environment and for autism to finally be recognized as a national crisis?
Go to the NAA Autism Action Center now and let your voice be heard!
Friendly suggestion:
Is there any way that comments could be listed in the order they were made, instead of in reverse order? If I want to read them in the order they were made, I have to scroll to the bottom, then scroll up to catch the beginning of the 1st comment, then scroll down as I read it, then scroll way up to find the beginning of the second comment, scroll down to read it all, then scroll up again, etc.etc. It would be so much easier if the 1st comment were at the top, followed by the 2nd, and so on. They make less sense when I try to read them in reverse chronological order, so PLEASE, if you can?
Posted by: Clay | September 10, 2009 at 05:41 PM
Libby;
I think perhaps:
Change the name autism to stroke or change it to an inflammatory autoimmune disease of the blood vessels,
Or at least give autism a simple definition and stop with the trying to describe ever aspect of consequences associated with a brain injury.
The word Autism was just made for Holly Wood and they have had a good time with it. Even Steven King has used it! Kids with unusual, spooky powers. No wonder everybody is confussed.
Posted by: Benedetta Stilwell | September 10, 2009 at 08:39 AM
This was so great and so easy to do. It was empowering. But I have tough question..... I was at the apple store today making an autism website and my consultant knew nothing about autism. Everyone has heard of cancer. What will it take for autism to be on everyone's lips? Until the average person on the street knows the issues, I'm afraid we won't get where we need to be. How do we make that happen? I feel like I should park myself and my daughter on a street corner with a big sign that says "Ask me about autism." Hmm...maybe I should get busy.
Posted by: Libby | September 10, 2009 at 12:12 AM
May I also suggest going to (the white house admin) at http://www.whitehouse.gov/contact/
and sending your own request for action to be taken. Make sure you as for a response by clicking on the button at the bottom of the web page.
We need Ins. and or Gov progams to provide coverage for therapies/treatments that work. We need pediatricans re-educated to be more aware of the signs of ASD early and not to be in denial.
I encourage you to encourage our government to start talking to dr and parents with childern that have improved or recovered and demand that what works should be provided to all those affected by autism.
We need to be loud, we need to be heard. 1 in 150+++ is too many. We can not stand for this any longer.
Posted by: Kim | September 09, 2009 at 10:48 PM
I about cried when i walked into DS's OT therapy this afternoon and the ENTIRE staff had made and were wearing 09.09.09 How Much Longer t-shirts promoting this event.
I hope it gets the attention it deserves.
Do we get to do Phone call Thursday and Fax it Friday, too??
Posted by: joy | September 09, 2009 at 09:48 PM
I hope we hear reporting on how many people participated. Great job NAA!
Posted by: Pamela | September 09, 2009 at 08:18 PM
Did my duty and sent the e-mails.
All the best,
Kent Heckenlively
Posted by: Kent Heckenlively | September 09, 2009 at 08:14 PM
LOL!! Gotta Love that the CDC responds to our messages with a vaccine infomercial!
It took me many times before I was finally able to get on the sight and send all of the letters. The page wouldn't load...But I finally was able to. Then landing on facebook I see that someone I used to work with years ago pre kids, doesn't have an affected child but had been asking people to join the campaign....That made my day.
Roger and Kathy,
I understand your feelings. But I don't think any of us have forgotten you nor did NAA mean to leave out those who have been suffering longer. I think you may both agree that the messages in general regarding the physical health issues surrounding the diagnosis of autism and the public cruelty treatment, etc are all-encombassing no matter what age we are talking about. Autism has been ignored for far too long and those that suffered in older generations will never be forgetten by any of us. The pain and ignorance surrounding the diagnosis is the same at any age.
Posted by: Allison | September 09, 2009 at 01:19 PM
Mine went through without a hitch. It must depend on how dense the traffic was in any given moment. I particularly loved the message to the DOE. I thought it hit the nail on the head considering that Arne Duncan has dragged his feet inexplicably on the crisis in schools (well, you know, it IS explicable in terms of his conduct in Illinois, but we would have been willing to pardon this if he'd done the right thing NOW). He's the new sheriff in town-- he should have treated the sins of former DOE regimes immediately and effectively if he didn't want to be smeared with their past criminal inaction. He was given a few chances and underreacted. So the tone of the message was quite appropriate. Kudos to Lori and NAA.
Posted by: Gatogorra | September 09, 2009 at 01:01 PM
Roger, I don't believe the NAA was implying folks like YOU weren't out there before... they're trying to relate that the rise in autism cases isn't due to better diagnoses. There are exponentially MORE children with autism today than when you were growing up.
Posted by: Erik Nanstiel | September 09, 2009 at 12:56 PM
I'm sorry Roger-- if you're trying to suggest that equal numbers of children were smearing poop and flapping hands thirty, forty years ago, this really isn't the place to promote that idea. If you're trying to say that the issue here is that disabilities have always been under-served, that's a separate issue within the overall concerns expressed by the safer-vax movement.
It's completely understood by most readers that yes, there were relatively rare cases of autism thirty, forty, fifty, even seventy years ago. If you want to know what members of this community feel about the treatment of disabled children and those relatively rare cases of autism from those eras, please read the recent coverage on restraint, seclusion and abuse of children with autism in public schools for some historical perspectives.
Posted by: Gatogorra | September 09, 2009 at 12:36 PM
Roger, I agree with you, my son will be 28 on Friday, the Eleventh (the day of ifamy for me personally too), and I know there were autistics around then, who suffered, oft times without the internet and information...we didn't have DAN!, we didn't have advocacy, we were out there all by ourselves, with misinformation, no supports, etc. Why are we not held up as the pioneer moms and dads, who had to endure so much, and yet not noticed? Does a child suddnely not become a statistic after they are 21 and out of the system, answer, yes....seems to me, that we deserve some kind of reverence, and rememberence for the paths we laid down for the new moms who are recovering their children. It may be too late for us, but not for them...our kids are the heroes...
Posted by: Kathy Blanco | September 09, 2009 at 12:14 PM
As somebody who was a severely autistic child over forty years ago,I was,and still am pretty angry about this statement in the NAA's message to President Obama:
"Should we falsely agree that the rise in rates is only due to better diagnosis, when we know our kids weren’t smearing poop 30 years ago & banging their heads 30 years ago & flapping their hands 30 years ago & unable to speak 30 years ago & unable to point to an object 30 years ago & unable to bathe & wipe & feed themselves & stay safe 30 years ago - only to go unnoticed?"
It implies there were no autistic children doing this stuff 30 years ago or longer,or that there were and nobody noticed them,While both statements would be false,it would be more accurate to say such children were out there,and nobody cared.Even if you were one of those,like I was,who wasn't in an institution,people tried to pretend you didn't exist all the same,be it a relative who didn't want you coming to their house anymore,or a doctor telling you and your mother,your bowel problems and frequent acute infections were "Just something children with autism had,we don't know why." We do have a shameful history of ignoring autism,one that has only begun to change in the last few years,but statements like this,from people who ought to know better,do not help.
Posted by: Roger Kulp | September 09, 2009 at 11:22 AM
Anyone else getting constant error messages when they try to send the emails? I haven't succeeded in getting any sent.
Posted by: Jenna Smith | September 09, 2009 at 11:03 AM
While I applaud the NAA's actions today (and my family and friends have all dutifully participated), I'm afraid that nothing will happen so long as big pharm continues to control the purse strings in Washington.
From OpenSecrets.com
Health Companies and Drug Manufactures Lead the Lobbying Pack During Year's Second Quarter:
http://www.opensecrets.org/news/2009/07/health-second-quarter-draft.html
If you want to see which how much money President Obama received or how much your Represenatives and Senators in Congress received from pharmaceutical and health insurance companies, click here:
http://www.opensecrets.org/news/2009/06/-name-office-party-health.html
Note: you can also download an Excel version of this information to slice and dice the data any way you please.
Posted by: Donna Alvado | September 09, 2009 at 10:46 AM
It's quick!
It's easy!
It's free!
I can't think of a reason not to do it.
Thanks to the folks who set this up. Works so s-m-o-o-o-t-h....
Posted by: nhokkanen | September 09, 2009 at 10:33 AM
Thank you NAA for this campaign! These are so well done. I forwarded all the different messages, but it was the "How Much Longer, America?" message that made me sob. If only it touches our Senators and Representatives...
Posted by: Melissa D | September 09, 2009 at 10:20 AM
"My name is Tanner. My name is Tanner." My name is... #Autism How much longer before I hear his voice...Again? http://tinyurl.com/my2jlq
Posted by: Tanners Dad | September 09, 2009 at 09:54 AM
Got the same ironic auto-reply.Will we be doing phone calls as well today? I'd like to get a little louder than an email.I feel like those are to easy to dismiss.
Posted by: alison macneil | September 09, 2009 at 08:47 AM
My autoreply from CDC. Thanks, Wendy and the hard working, underpaid (not a six figure salary to be found), underappreciated (in some circles) staff of NAA. While other larger, better funded groups create on pretty "awareness" ads and co-op with Ralph Lauren and pretzel companies (gag), NAA gets to the heart of the epidemic.
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Posted by: Stagmom | September 09, 2009 at 07:18 AM