Posted by How About the NIDS foundation??-Grandma Peg
on June 24, 2000 at 18:20:00:
In Reply to: Please get on the contact list for funding posted by Donna on June 22, 2000 at 02:31:43:
: We are gathering a list of support groups, providers, and parents (and other relatives) who deal with autistic individuals.
: I am a parent of an autistic child and a group of us realized that one of the reasons that we are not getting the funding we would like for this problem is that there are a whole lot of clustered groups of families out there...but they are not connected in any organized way to one another or to a central home base.
: The Autism Society of America is supposed to be the hub for this, but their membership is small considering the number of autistics in this country. They are also disconnected from most families. I would like to hear from as many families, providers, support group leaders as possible within the next week or so. Our project is to gather all info possible so that when their is legislation, or anything else that affects us, we can plan an organized attack to disseminate the information.
: THANKS! Please email to email@example.com
REPLY; It seems as if we may have done the wrong thing in getting under the blanket of Autism...you know the med. society's general re-action when you say 'your' child is autistic...they are apt to write you off. However, the NIDS foundation, started by Dr. Goldberg is operating under his assumption of a viral cause to an Epidemic of neurologically damaged children. And I think they've decided to rely on private funding..but I'm truly thinking 'we' ASD people need to get away from the Autism societies and into an enclave of our own as we are unique and tho' similar to autism, most are not real autistics, only with symptomatic- behavior likenesses. I don't totally agree with Goldbberg but I don't totally disagree with his point of view analysis' either...I think he's more right but think his therapies should be stricter than the standard allergy diet. He does treat for viral infections too and that sounds as reasonable as anything else that's been found in research. The main thing he says is that autism is usually genetic but genetics can NOT cause an epidemic such as we have now...and 'science' says so..(paraphrased). Personally, I also agree with every finding so far, I think they are all part of the whole picture and are actually in general agreement. But, as said, it's beginning to get thru' to me, more and more, that we should not be 'in with autism'...tho' God Bless them, they've been the only place to 'take us under their wing'. If 'we' are ever truly defined, and it's not labeled autism, we will once again be out of any help of funding, governmental or private. That's why we need to emphasize and distinguish our differences. Perhaps, when government agencies of all countries finally concede that something they had a hand in has Caused this...like Thalidomide...then we'll get help...but I'm not willing to wait til hell freezes over either. Grandma Peg