Autism Info

Created By: ljok5
Last Modified: 04/30/07
Summary: CNN Autism spot with host Dr. Sanjay Gupta
Transcript of aired episode regarding specific instance of social behavior and computers as assistive technology.note - Sun, 22 Apr 2007 01:47:20 GMT
(BEGIN VIDEOTAPE)
GUPTA (voice-over): This is
Amanda Baggs, rocking back and forth. She does not make eye contact.
Her movements are erratic. Her behavior eccentric. She can not speak.
And for most of us, this is precisely what we expect when we see a
person with autism.
But Amanda will absolutely change
your expectations. Would you define yourself as an autistic person,
Amanda? As you'll see, Amanda has a lot to say. Her brilliance is laced
with a wry sense of humor. We first came across Amanda on YouTube. Her
appearance there so startling, I wanted to meet her. I had so many
questions.
AMANDA BAGGS (through translator) : The
way I naturally think and respond to things looks and feels so
different from standard concepts or even visualization that some people
do not consider thought at all. It is only when I type something in
your language that you refer to me as having communication.
GUPTA: Amanda calls herself bilingual. For other autistic people, she
has movements and gestures to communicate. But for the rest of us, she
made this video to teach us how it works.
She jokingly
calls us neurotypical, meaning we do not have autism. She communicates
with the keyboard and her computer. And for visitors, a voice
synthesizer.
So you've seen the video with your own
eyes. I want to show it to you through Amanda Bagg's eyes. She lives in
this building and she lives alone.
This is where Amanda
made the video. She shot it, edited, and posted it on the Internet, all
completely on her own. Surprised? If we must label her, she won't like
it, but medically, she is a low- functioning autistic. . Part of the
reason people watched it was because they were so stunned that a person
who carries this label of autism, who doesn't speak, could put together
such an astonishing video.
BAGGS: I put together several videos before and not a lot of people watched it.
GUPTA: But this time, she got through. Amanda, when you hear about
people with autism that are institutionalized, that no one has really
ever made a concerted effort to try and reach out to to communicate
with in some way, what do you say to those people?
BAGGS: Everyone interacts with this society. And if you shut off from
interacting with society, then you shut it off because it sure doesn't
seem to me that I've ever seen someone who doesn't interact with
society. GUPTA: In fact, Amanda interacts with everything around her.
What about this? This was interesting. You can read, obviously, but
you're actually putting your face in the book. Why? What does that
mean?
BAGGS: I like the smell and the texture of that particular paper. That book has really rough paper.
GUPTA: Amanda says this is her natural way of thinking, in patterns and
in colors, thinking with language and written words as we do is not
natural for her. Therefore, she struggles with it. If you wanted to
talk to me, could you do that?
BAGGS: I could make speech sounds. At this point, I could not make them mean anything I was thinking.
GUPTA: Does that frustrate you?
BAGGS: Not really. I type really very fast.
GUPTA: Yes, you do.
Yes, she types very fast. When she's feeling good and not distracted,
Amanda types about 120 words a minute. But her ability fluctuates. Some
days she can only type with one finger at a type. And occasionally, she
can not type at all. On rare days, Amanda can become catatonic.
Distractions, interferences, sensory overloads all present huge
obstacles for Amanda.
So she is most secure and most
comfortable here at home with her dog Billy Jean and with all of her
computer equipment as well. But when she leaves here, she's assaulted
by too much stimulation.
I went with her to see her
dentist. She uses a wheelchair, not because she can't walk -- she can
-- but she says the very act of balancing herself proves too
distracting.
And you'll notice she's focused on her
keyboard. In the dentist chair, the buzz and flicker of the fluorescent
lights are overwhelming for her. They can trigger migraines. So Amanda
soothes herself. She fiddles with her blocks. They are familiar and
calming.
When Amanda hit herself, I was startled, but
not surprised. It is a familiar autistic behavior. She must be so
frustrated. Such a bright woman, so trapped. And yet I wondered, how is
it is that Amanda has been able to reveal so much about herself? And
how many more people are there just like her?
(END VIDEOTAPE)
GUPTA: It's really remarkable to meet her. Amanda is technically a
low-functioning autistic. That's her diagnosis. The hallmarks are
obsessive-compulsive behaviors, that erratic hand flapping that you
saw, occasional head banging, even regression. They will lose some of
their abilities as they get older. In fact, that was the case with
Amanda as well. When she was younger, she actually talked.
(BEGIN VIDEOTAPE)
GUPTA (voice-over): It's a bit disconcerting talking to Amanda. Typical of people with autism, there is no eye contact.
BAGGS: There is problems I don't know on my meds.
GUPTA: Until she responds with her keyboard and voice synthesizer, it's
hard to know if what I'm saying actually registers.
If
you didn't have this, how would I communicate with you? How would I
understand what you're trying to tell me? How would you guide me or at
least help me understand you?
BAGGS: I tend to kind of bludgeon people over the head with that kind of communication. Not sure.
GUPTA: Growing up, Amanda attended regular public schools. She could
read at an early age. It's called hyperlexia, and it's common for
people with autism. She says she learned spelling by reading. She
learned to type with a teaching software. Then in her teens, she slowly
lost her ability to talk. Would you say that people would be surprised
to find out how well you can communicate being a person with autism?
BAGGS: Generally, if they see me first before they see me talk, they
are surprised, and sometimes disbelieving. And then sometimes if they
first see me, right, they think that I'm not autistic.
ERIC HOLLANDER, DR., AUTISM CENTER OF EXCELLENCE: What's extraordinary
is that some individuals that you think are mentally retarded and have
no language, once they're able to communicate through a keyboard, they
have high-level processing and thinking about the world. And they're
able to communicate in an expressive fashion.
GUPTA:
Remember, that's how we first found Amanda, via her computer on
YouTube. In fact, the Internet has allowed her to leave her secure and
orderly, little apartment to meet others with autism. For example, she
likes to go to an online community called "Second Life," where she's
created an animated alter ego, who looks and acts like her. Even here
in her virtual world, she's typing and rocking back and forth.
HOLLANDER: The big advantage of the Internet for people with autism is
it does filter out all of the facial expressions and the body language.
So people don't have to spend time trying to disentangle or understand
the non-verbal forms of communication.
GUPTA: What
are we missing here? Why has autism been this, something that people
have not really been able to get their arms around in terms of being
able to communicate, be able to understand it fully?
BAGGS: There's a communication gap that goes two ways. It's not a one
way street. And so part of the problem is that the people are not
thinking. If they don't understand us, it's because we are broken. And
if we don't understand them, it is because we're broken.
GUPTA: As for communicating with others who have autism, Amanda said
it's not about words. I asked her about an autistic woman she wanted to
meet. Why didn't you just look at her and make a motion, like hello or
hi or wave the hand or something to acknowledge her at the time?
BAGGS: That would be a bit invasive, wouldn't it?
GUPTA: Well, it happens all the time. I mean, I think a lot of people
would understand that sort of gesture. Do you think that she would have
been offended by it or that it would have been too invasive to her?
BAGGS: When I'm around other autistic people where the meaning is known
already, why bother with forcing an arm to do all that when you can
already make the meaning clear? It's redundant.
Why
would I spend not only the physical energy on doing the motion, but the
cognitive energy working out which particular motion is the one you
want out of me right then? It's like running calculus in your head to
say hi. And it's not usually work it in the long run.
GUPTA: In other words, meeting our expectations is not important for her. It can actually overwhelm her.
What is the message then, for the parents, for the people who are providers? I mean, try harder to communicate?
BAGGS: Listen to other autistic people. In fact, expose autistic
children to a wide variety of autistic adults. It may be the autistic
adults who do have neither typing or speech, who are far more equipped
to be able to communicate with other autistic people.
(END VIDEOTAPE)
GUPTA: You know, as a doctor, this was a remarkable experience just
getting to sit down with Amanda. You can read all about my thoughts
about the interview and tell me yours as well by going to my blog,
cnn.com/health. Also on that health page, you're going to find out how
computers are helping adults with autism and a link to Amanda's video
that first intrigued us so much. First, stay where you are, though.
From: http://transcripts.cnn.com/TRANSCRIPTS/0704/21/hcsg.01.html


