Comments on: This Is Only the Beginning

By: Zaecus

Zaecus — Sun, 23 Dec 2007 10:00:08 +0000

Unfortunately, I don’t have any useful input on those research goals because, while they might be important and ethically pursued, the only one close to what is most important specifically to me is treatment, which they have phrased in such a way as to mean ‘finding every way possible to correct the autistic person or teach them how to better conduct themselves in a neurotypical world’.

Been there, did that. Without help that I haven’t been successful in getting from any source to date, I don’t see myself recovering enough from the resulting crash enough to contribute anything back to society.

We need research in how best to modify society’s expectations so that people, autistic or not, have more freedom in expressing themselves and getting their needs met.

By: The Law of Unintended Consequences: In the Wake of “Ransom Notes”

The Law of Unintended Consequences: In the Wake of “Ransom Notes” — Fri, 21 Dec 2007 20:22:49 +0000

[...] now that we’ve started it, we’ve got to keep that conversation going. ads, advertising, ASD, Aspergers, autism, [...]

By: Misha

Misha — Fri, 21 Dec 2007 04:34:00 +0000

Thanks for the links and info, Kristina.

And I agree completely with what you said, Morgan. That type of research needs to be done so badly so our kids can get the best programs and help possible.

By: Kristina Chew, PhD

Kristina Chew, PhD — Fri, 21 Dec 2007 02:31:20 +0000

@David McDonald—I’ve shed more than a few of those too—-the feeling makes me pause for a moment and then I know I have to get up and move on.

By: Another Voice

Another Voice — Fri, 21 Dec 2007 00:25:28 +0000

Thank you for all of these links.

By: David McDonald

David McDonald — Thu, 20 Dec 2007 21:46:57 +0000

I promised myself that I was going to take December off from blogging or commenting. Only made it 2/3 of the way…

The only tears shed for my autistic nephew/son have been those of frustration in regard to the broken system he lives in.

By: Kristina Chew, PhD

Kristina Chew, PhD — Thu, 20 Dec 2007 19:46:24 +0000

At the IACC meeting, Dr. Joyce Chung—who heads the NIMH’s “autism team” to put together the Stategic Plan with the IACC’s input—-made a point of saying that they want to get as much input as possible, however many (many, many) emails are received.

Autismville, that’s a topic (IDEA compliance) I’m always interested in hearing about. Not that it’s perfect here in NJ as I know from our experience—but I have definitely learned how to speak up for Charlie on behalf of his education.

By: Emily

Emily — Thu, 20 Dec 2007 19:40:15 +0000

Grrrrr on Dr. Phil. Would he have someone on the show who was brunette talking about killing her mother and relate it to her brunettedness? Or have a person with PTSD or who has diabetes on there so they can talk about homicidial ideation? Probably not, but that behavior is probably as closely linked to being brunette or having PTSD or diabetes as it is to autism. Grrrrr.

The RFI comment suggestion is a great one. Thanks for posting all of that.

By: Autismville

Autismville — Thu, 20 Dec 2007 17:35:49 +0000

Great suggestion Morgan!

Also, not necessarily IACC related, but could we lean on the Department of Education a bit so maybe they would police IDEA compliance. New Jersey compared to Texas is not even close! Why the inconsistency… I suppose that’s another topic for another day…

By: Morgan

Morgan — Thu, 20 Dec 2007 16:37:00 +0000

My suggestion to the IACC’s RFI: there are hundreds of thousands of autistic children in public school programs around the country — some good schools, most awful. There has never been any genuine scientific research to determine which programs/methods are effective, which are not, etc. Why not let’s find out?

The laboratory is there waiting, where are the scientists?