Comments on: Editing.

By: Tom

Tom — Thu, 26 Jun 2008 23:44:02 +0000

I’ve noticed that autistic people tend to speak in disclaimers… “I’m not trying to say A, B, or C, just Z”. Just the fact that the blog entry comes across as a big disclaimer (“Here’s all the things that CNN didn’t show you about me”) shows to me that you’ve got autistic tendencies.

I also struggle with the “people not believing I’m real” issue, although for me it manifests as a difference between how I look “on paper” and in reality. I have been somewhat successful educationally, and happenned to be lucky that what I was studying (computer programming) was very in demand when I was doing it.

I remember when the TV show “The bachelor” came out and they advertised it with a commercial that said “He’s six feet tall, dark haired, ivy league educated, and a self maid millionaire”… insert shots of women swooning. All those external things were true of me, the very things that supposedly should make me super popular, but yet my AS and other issues have meant that I can’t find people to hang out with me much less date. It’s sad not being able to really explain why someone with “such potential” would be so socially disconnected.

By: Sheree Burke

Sheree Burke — Wed, 21 Nov 2007 00:32:34 +0000

Amanda:
Great job! Not easy to put yourself out there to the public! Regarding the omissions by the media that can “change” the content from what you intended…PEOPLE Magazine did an article about autism and FC with my son participating, and in a sidebar, they showed an augmentative communication device with a title, “How Jamie Burke Learned to Speak..” We had never even seen that device!! Again, hope life doesn’t get too overwhelming with all the publicity. Thanks again, for all you are doing. Best, Sheree and Jamie Burke

By: Ettina

Ettina — Fri, 31 Aug 2007 19:56:46 +0000

What Cyndi said about ‘working with people like that’ really disturbs me. *I* work with (technically volunteer with, since I’m not paid for it) ‘people like that’ and I would not be surprised if the diaper-wearing minimally verbal autistic boy I work with turned out to be just as smart and capable as Amanda Baggs. If he can find an effective communication method such as Amanda has, he’d probably have a lot of insightful things to say. I can see that clearly by how he reacts to things. He notices the difference between autistic and NT, for example, which is supposedly beyond the abilities of ‘people like that’. He knows I’m autistic, in fact in a way similar to him (qualitatively, not quantitatively). I can tell he knows this because of the way he reacts to me – the way he looks at me when I stim in front of him, the way he plays with me (interactive stimming, which is probably pretty hard for NTs to do), etc. He’s been called profoundly retarded but that is clearly an extreme underestimate of his abilities. He just finds it hard to show what he knows in a way NTs understand.
The idea that someone would look at the way he acts and what he can’t do and assume someone like him couldn’t write insightfully sickens me.

By: Jeanette

Jeanette — Sat, 07 Jul 2007 04:09:26 +0000

Hi Amanda,
What America saw on television was 45 minutes of hundreds of hours of video tape. Extreme Makeover did not focus on what my children couldn’t do, but what they COULD do. They did not show Caitlin stimming, or taking 45 minutes to tape the scene where we watched the demolition. They did not show Kiernan buzzing and jumping during the reveal. If it were up to me, they would have shown the bad with the good.
I always said that they would never have had you on CNN without background checks. We were on Good Morning America a couple of years ago and they did their homework also.
There are people who are unhappy in their own lives, so they must pick ours apart also.
Stay strong…
Jeanette

By: Julia

Julia — Wed, 04 Jul 2007 04:52:34 +0000

Hm. Someone talking about “my staff” all the time.

Maybe Amanda is a cat! [joking]

By: Development and Regression: Kennedy Krieger research and Donna Williams interviews Amanda Baggs

Tue, 03 Jul 2007 04:27:01 +0000

[…] and counting. A February 22nd CNN interview further brought Baggs into the media spotlight, and her reflections on her experience of being interviewed are essential commentary to the TV […]

By: anon

anon — Tue, 03 Jul 2007 01:27:13 +0000

I have the opposite problem. My bladder gets overstretched to the point where it needs catheritization. I sometimes don’t realize I need to go, sometimes get so mixed up in intertia that I can’t get from the task I’m doing to using the restroom, and other times can’t ask people when I need to – for example if someone else is driving, or if I’m in a situation where I need to say something not just get up and leave. I have to set alarms to wake myself up every night because I don’t realize I need to go, and don’t have accidents until my bladder is overflowing (and have been warned that causes kidney damage to let it go that long.)

By: rr

rr — Sun, 01 Jul 2007 22:24:08 +0000

My comment about not needing diapers was just because I was being factual about some stuff Cyndi brought up as apparently contradictory “benchmarks” of how one is supposed to behave in relation to one’s “acheivements” like an undergrad degree. Actually, although I do not need diapers, I can not hold urine very well. When I was younger I resorted to just not drinking so that I would not get into a situation where I had to go and could not hold it. I developed kidney stones. I don’t know if the lack of retention is related to autism at all but I *am* autistic, and I *do* flap, and if you are driving and I say I have to go, you had better pull over to the side of the road.

By: rr

rr — Sun, 01 Jul 2007 22:11:57 +0000

I flap. I have an undergraduate degree in something-or-other, summa cum laude. I don’t need diapers. I think functioning labels are not appropriate in most, if not all, situations, in that they are too general and tend to limit imagination and accuracy at the same time.

By: ballastexistenz

ballastexistenz — Wed, 27 Jun 2007 03:20:59 +0000

Oh, I wasn’t referring to you.