Wednesday, February 21, 2007

Amanda Baggs on CNN

Amanda Baggs is about to receive the recognition she deserves. When I checked my referrals and saw that about eighteen percent were looking for the video I posted I knew something was up. Sure enough she is featured in a blog post by Dr. Sanjay Gupta, chief medical correspondent for the health and medical unit at CNN.

Last week, I met a remarkable woman. Amanda Baggs is 26, super-intelligent and witty. She lives in Burlington Vermont, on a beautiful lake and is very skilled at shooting and editing videos. In fact, it was one of her videos on YouTube that caught the attention of CNN. I had met her only through e-mails and the Internet. I'd be telling you a very different story. But I was able to visit her in person.

Despite the friendly invitations and our lively e-mail banter, Amanda would not look at me when I walked in the room. She wore sunglasses and sat in a wheelchair, even though her legs are fine. She could make some noises, but could not speak. Amanda has what doctors call low-functioning autism. If it were not for a device that synthesizes words as she types on a keyboard, we would not have been able to communicate with her at all.

She taught me a lot over the day that I spent with her. She told me that looking into someone's eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. Is she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn't communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn't help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

I am a neurosurgeon and Amanda Baggs opened my eyes about the world of autism. I am eager to hear what you think of her story and if you have stories of your own.

According to him, Amanda will be featured tonight on Anderson Cooper 360.

There is a cascade of comments at the site, generally positive and definitely several notches above the blog-norm for comments threads. No big surprises but interesting reading.


mcewen said...

I plan to watch [or TIVO if desperate]
Wish I had your optimistic outlook though, I'm more of a die in the woods pessimist ........will I be right?

Hoots said...

Thanks for visiting. I just posted a few minutes ago. You must be tracking my blog with an aggregator.

That's a new phrase for me..."die in the woods." I kinda like it better than the old "dyed in the wool."

As for optimism, I guess I don't have any advice. That, like most points of view, is merely a matter of choice. My counsel to anyone is this: We have little or no control over what happens to us, but we have much more control over how we respond. Anger, frustration and other counterproductive responses are what happen when we allow events to have more power over us than we deserve.

Fore Sam said...

Can you explain how Amanda has the wherewithal to make those videos but can't boil water?