Autism Speaks is funding a project to develop a national database in the United States. This is how they describe it:
"The national online autism database will serve as a shared resource to centralize registration of families and individuals with autism spectrum disorders and connect them with researchers, parents and other individuals with autism throughout the country and the world. In addition to supporting scientific investigation, it will provide individuals and families affected by autism with unprecedented information about the experiences of others and serve as an open resource for educators and policy makers."
Full story here
One more reason (as if we needed any more reasons) not to be officially diagnosed...
The diagnosis issue is difficult. I think we should have a thread about the real pros and cons of getting a diagnosis so we can discuss all the issues and people can make an informed decision. I will start one in the Diagnosis forum.
Autism Speaks seem to seek to have a strong control over information on autism and autistics.
The paragraph from their website I've pasted below sounds much like the ABA sales pitch.
Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure. Research indicates, however, that early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with Autism Spectrum Disorders. As soon as autism is diagnosed, early intervention instruction should begin.
As with the ABAists, the research claim never leads back to any reputable peer-reviewed medical journal. Most often, this kind of information gap is bridged by the first-person testimonial -
the heart-wrenching against-the-odds success story that seems to appeal to American sentiment.
My guess is that this information network is preparing the ground for ABA to metastasize throughout the system.
BF Skinner's "behaviorism" had strong right-wing appeal at the height of the Cold War with its bizarre anti-communist witch-hunts, so it's not surprising to see it making a come back now.
Autism Speaks seem to seek to have a strong control over information on autism and autistics.
Kinda like animal farm. Autism speaks is code for only we speak for autism.
" The national online autism database will serve as a shared resource to
centralize registration of families and individuals with autism spectrum
disorders and connect them with researchers, parents and other individuals
with autism throughout the country and the world."
From the press release
In order for this to happen there must be names and addresses. I noticed they say policy makers not law makers. Same thing.
Some times the sky does fall chicken little