A Chance to Let Your Voice Be Heard Take the Autism Survey by March 30, 2010
By Beth Clay
I am a woman of strong opinions, but it is not my opinion that I want to write about when talking about autism during Autism Awareness month. It is yours – the individuals and families living with autism and the educators and health professionals working in the community. This is why I have posted a short online survey where you can discuss how you feel about the current state of research for autism HERE.
It will remain open until March 30, 2010 at 11:00 pm.
A large response from the community will give the data more power. So, please take the survey and get everyone you know to take it as well.
What is My Connection to Autism? It has been a few years, so there may be some who do not know my connection to the autism community, since I am not a parent of a child with autism. In fact, it is hard to believe that it has now been 11 years since I first became involved in the community through my service with Congressman Dan Burton leading the health care oversight investigations on the House Committee on Government Reform. The four years that would follow were full of information gathering, hearings, reports, interviews, conferences and getting to know thousands of families living with autism. We were the first on Capitol Hill to say there was an epidemic rise in autism rates and helped increase the NIH research funding five-fold. At the time there was no Autism Speaks, or Autism One, National Autism Association or Age of Autism. Unlocking Autism and SafeMinds had just been formed. Since entering the private sector, I have continued to be involved with the community through various activities both as a paid consultant and a volunteer. I am doing this survey as an independent activity and not as a representative or consultant to any organization.
I have kept the survey short, but also included a comment section, so you will truly have a chance to have your voice heard. I look forward to sharing the results with you. Thank you.
https://www.surveymonkey.com/s/autism2010survey
I wanted to share the comment I left at the end of the survey.
"I believe that much of epidemiology we parents want done has been done in small stages at the CDC. They already know what the results would be on a vax/unvax study, the results of high thimerosal/no thimerosal, early vax/late vax. They already know.
I believe the "backroom dealing" regarding the healthcare legislation should be trying to reconcile the roles of the pharmacuetical companies, health insurance companies, power companies, chemical and industrial companies and health providers in dealing with the oncoming population of kids and young adults affected by vaccines and by the growing onslaught of environmental pollutants.
I believe we are leaving our children and grandchildren a chemical cocktail to live in with unkonown implications to our genetic future.
But I can say one thing for sure, the only ones left standing 100 years from now will be those who can withstand this environment. It will be tolerate, detoxify or die. Whether this be through Divinity or Darwin, God have mercy on those who created this future for the little ones."
I know that my ending sounds grim, but I can see no way to turn this train around.
Posted by: Tim Kasemodel | March 28, 2010 at 01:46 PM
I am happy to participate in this poll, but I hate to say I am wondering how much good it will do. I would like to say I believe in our judicial process, but too many legislators seem to be following their own interests rather than that of their constituents. It is the parents of injured children against a multi-billion dollar industry. I wonder how many more children will have to be injured or die before people wake up. It reminds me of the Wizard of Oz ... the vaccine industry keeps saying "Pay no attention to the man behind the curtain....I am the great and powerful Oz."
Posted by: Janet Keith | March 27, 2010 at 11:22 AM
Regarding Post by amanda b.
"Sick of Autism Speaks as well. ACCEPT. HELP. SUPPORT. EDUCATE. ADVOCATE.
Autism Speaks does none of the above."
I got an email today requesting that I participate in the "Walk for Autism" fund raising. I usually just ignore Autism Speaks now that I am onto them, but I couldn't help myself today so I wrote an email back to them as follows:
In a message dated 3/26/2010 6:11:37 P.M. Central Daylight Time, [email protected] writes:
"Autism Speaks is listening!!!"
Autism Speaks is NOT listening to the hundreds of thousands of parents who witnessed their children regress into autism as a direct cause of VACCINES.
Posted by: Autism Grandma | March 27, 2010 at 12:39 AM
PLEASE TAKE THIS SURVEY!!!
It is short and only takes a few minutes. Rating from Zero to Ten regarding satisfaction with government performance (or should I say LACK of performance)
I rated ZERO on every question because this is exactly how much the government has done to recognize and support autism and vaccine safety research. ZERO.
Posted by: Autism Grandma | March 27, 2010 at 12:31 AM
PLEASE TAKE THIS SURVEY!!!
It is short and only takes a few minutes. Rating from Zero to Ten regarding satisfaction with government performance (or should I say LACK of performance)
I rated ZERO on every question because this is exactly how much the government has done to recognize and support autism and vaccine safety research. ZERO.
Posted by: Autism Grandma | March 27, 2010 at 12:29 AM
yeah, where is the survey?
Posted by: anona | March 26, 2010 at 07:37 PM
I am sure this is a national security issue, therefore, the government has and will do everything they can to NEVER disclose the harms done by vaccines, or the ultimate reason why they are left to maim and kill children. I am sure as the nose on my face, it has nothing to do with saving us from "life threatening" diseases. And, everything to do with the chaff and the wheat....thinning out the herd...and...experimenting...on all of us.
Posted by: kathy blanco | March 26, 2010 at 07:00 PM
Think the research is stupid, lacking and not really what we need at this point. Sick of Autism Speaks as well. ACCEPT. HELP. SUPPORT. EDUCATE. ADVOCATE.
Autism Speaks does none of the above.
Posted by: amanda b. | March 26, 2010 at 06:59 PM
Have to agree with AnaB. People who take the side of families living with autism, who have every reason not to be associated with the "anti vaccine, disease bearing unvaccinated siblings, of parasite parents who just want someone to blame" hold a very special place in my heart too. I wish and pray that some day soon we can honor those who waged the battle to do the right thing and save more families and especially the children from the autism nightmare. I meet more and more people everyday who say "All those moms who say my child was fine until this or that vaccine can't be wrong" We are making head way. We have to fight for our children, you could have easily walked away. Yet you like so many brave doctors scientist, etc.put your reputation, your licenses and sometimes carreer advancement on the line, for my child and thank you seems so inadequate. Beth you are a Hero. Thank you thank you thank you
Posted by: bad penny | March 26, 2010 at 05:42 PM
I would do it but seems the survey is only for those in the US.
Posted by: Abdullah | March 26, 2010 at 02:21 PM
Thank you Beth. People who fight this fight while having no familial connection to Autism hold a most special place in my heart. There are thousands of causes you could have chosen to give your time and talent to and you chose this one. I am very grateful.
Posted by: AnaB | March 26, 2010 at 09:52 AM
done..excellent idea..
Posted by: candace | March 26, 2010 at 09:34 AM
Very short & I think will be effective tool... Thank You! Looking forward to the results...
Posted by: Tanners Dad | March 26, 2010 at 07:31 AM
Did it yesterday. Thanks!
Posted by: A Mom | March 26, 2010 at 06:23 AM