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maddezmom Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Feb-23-07 01:37 PM
Original message
Living with autism in a world made for others
Edited on Fri Feb-23-07 01:44 PM by maddezmom
will try to post a link to the CNN clip, but here is here youtube link they are talking about

http://www.youtube.com/watch?v=JnylM1hI2jc


this could be my son. Please watch it. :)


Living with autism in a world made for others
POSTED: 1228 GMT (2028 HKT), February 22, 2007
Story Highlights• Amanda Baggs, 26, is part of new generation of adults with autism
• Baggs communicates using a computer or a voice synthesizer
• 600,000 adults have autism in the U.S., according to the Autism Society of America
• No cure for autism; precise causes unknown

By A. Chris Gajilan
(CNN) -- When I walk into her apartment, Amanda Baggs makes no eye contact. She doesn't come to the door or raise her hand to greet visitors. In fact, I'm having a hard time discerning whether she even knows I'm there. I say hello and introduce myself, but she remains silent, sitting at her desk, staring out the window, rocking slightly back and forth.

Amanda Baggs is a 26-year-old woman with autism. I've been corresponding with her for weeks via e-mail. I've read her Web site, and from her I've learned a great deal about living with autism.

A video she posted recently on the Internet describes how she experiences the world. "My language is not about designing words or even visual symbols for people to interpret," she says in the video. "It is about being in a constant conversation with every aspect of my environment."

Admittedly, it's hard to recognize her in real life, after meeting her online persona first. (Read Dr. Sanjay Gupta's thoughts after meeting Amanda Baggs. )


more:http://edition.cnn.com/2007/HEALTH/02/21/autism.amanda/index.html

She will be answering questions here:

http://edition.cnn.com/exchange/ireports/topics/forms/2007/02/living.autism.html

What an amazing woman. :)
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hunter Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Feb-27-07 03:41 PM
Response to Original message
1. It's so hard to describe this.
I'm fairly functional in this world made for others, but when I'm alone, or not sitting at the keyboard, I don't think in words, ever. Before I was married with children I used to throw a couple of jugs of water in my car, no food or much of anything else, and go out to the desert until I came back. Often I'd be away for a few days. It was the most wonderful thing because the words were gone and I could think. (Eating has never been a big deal to me, if there is food I eat, if there is no food I don't.)

If I'm thinking about something and someone interrupts me it always takes me a few seconds to engage -- what I hear them first say might as well be a foreign language to me and I have to wait for some kind of replay in my memory before the meaning registers, and that meaning doesn't always come. I think I know what English sounds like to someone who doesn't speak it because I hear it that way so often.

If I'm in the middle of writing computer code it will takes me a very long time to switch back to writing or speaking English, a few minutes in fact.

I don't like looking at people when they talk because it confuses the hell out of me and I lose track of what they are trying to say.

It didn't strike me that language was an important part of people's thinking, and not simply a way of describing what one sees in one's own head, until my mid-twenties.

There's apparently a facility for using language in cognition that is variable and necessary to varying degrees in different human cultures. Our own western culture, this "world" we live in, is prejudiced toward linguistic cognitive skills. "Successful" people in this culture often have very good conversational skills and a keen facility with human body language.

People lacking in these skills, especially those who have what are described as PDD's or various sorts of autism, are more likely to be seen as handicapped or mentally ill than they might in other cultures.

Here's an interesting study which touches on just one aspect of this:

http://www.pnas.org/cgi/content/abstract/103/46/17568

Current approaches to human cognition often take a strong nativist stance based on Western adult performance, backed up where possible by neonate and infant research and almost never by comparative research across the Hominidae. Recent research suggests considerable cross-cultural differences in cognitive strategies, including relational thinking, a domain where infant research is impossible because of lack of cognitive maturation. Here, we apply the same paradigm across children and adults of different cultures and across all nonhuman great ape genera. We find that both child and adult spatial cognition systematically varies with language and culture but that, nevertheless, there is a clear inherited bias for one spatial strategy in the great apes. It is reasonable to conclude, we argue, that language and culture mask the native tendencies in our species. This cladistic approach suggests that the correct perspective on human cognition is neither nativist uniformitarian nor "blank slate" but recognizes the powerful impact that language and culture can have on our shared primate cognitive biases.


One of the most important impacts of the internet has been that it allows people outside the normal range of linguistic cognitive skills to communicate at their own speed.

I notice it takes me a long time to write, and it's not because of my typing skills. I type as fast as I can think using words, which is not fast at all. (I find Internet Messaging to be nearly impossible, I'm always behind the conversation, just as I am in spoken conversation.)

When I post on the internet, something I've been doing for over twenty five years now, I always feel like this:



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Deja Q Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-05-07 08:01 PM
Response to Original message
2. Anyone with an Autistic disorder who doesn't cave into the urge to suicide is amazing.
One day I'm going to write a book, so don't take the subject line. © 2007 :D
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hunter Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Mar-10-07 11:20 PM
Response to Reply #2
3. Depression doesn't seem linked that way in me.
If depression is whatever anti-depressents fix, then depression in me means I'm irritable, a slave to my obsessions, and impossible to live with. There's no "urge to suicide" to cave into. If I'm feeling really rotten, really under stress, I take off. I can almost picture what sort of semi-homeless person I'd be if everything came apart, my meds stopped working, my family kicked me out of the house, and I wandered off on my own. Years ago, when I was living on my own, that's what I was -- semi-homeless. I never lived any one place for very long, and when I was in college I was always the odd roommate who was never around, sometimes for days at a time.
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tavalon Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-09-07 02:57 AM
Response to Reply #2
5. My child has severe autism, though less typical
Most people say that he seems genuinely happy. I would agree. It's hard to say all the time but I think he is. He's certainly never going to have a normal life, whatever that is, but he's never seen a normal life so I don't think he misses it. I just hope we can keep him in the family and don't have to send him somewhere. That would be heartbreaking unless it was clear that he wanted to try a more independent life.
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WritingIsMyReligion Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-13-07 06:12 PM
Response to Original message
4. I think that's cool.
:)

I had a 30% or so chance of having Down Syndrome when I was born--the doctors couldn't at that time do an in-utero chromosomal reading to check chromosome 21, though they must have known about trisomy 21 then. When my mother found out, she spent hours praying (she was still religious then) for me to not have to deal with that.

I am "normal" now, and definitely don't have Down or even really AS. However, I do spend an inordinate amount of time in my head, telling stories to myself, and have "shaking" in my hands that I unconsciously do when thinking, and consciously do when daydreaming. I used to say when I was little that the "shaking" made my thoughts run. Even now I am twiching an elastic band (my favorite) back and forth and around and about in between typing these paragraphs. I am very good at hiding this, though, and never do it in front of non-family members, so I don't think I could be on the spectrum somewhere, seeing how aware and sneaky about it I am. :D
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