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April 2nd, 2008
01:26 PM ET

Finding Amanda

By Dr. Sanjay Gupta
Chief Medical Correspondent 

All day long, you have most likely been hearing and reading about autism on CNN and CNN.com. The numbers, the costs and even the cultural impact. But, what do you really know about it? Have you ever met someone with autism, and would you even know what to look for? These were things I had been thinking about for some time. In our documentary tonight, I will take you on a journey I found remarkable. Straight into the life of someone who has autism.

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Dr. Sanjay Gupta with Amanda Baggs

Amanda Baggs is 27, super-intelligent and witty. She lives on a beautiful lake in Vermont and is very skilled at shooting and editing videos. In fact, it was one of her videos on YouTube that first caught the attention of CNN. If 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. Tonight, you will see what I saw and hear some of my first impressions.

Despite the friendly invitations and our lively e-mail banter, Amanda would not look at me when I walked in the room and during my time with her. She wore sunglasses and sat in a wheelchair.  She could make some noises, but she did not speak. 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.

To be clear, Amanda is not typical of people with autism. At a young age she went to school and was considered gifted.  At age 14 her autism was diagnosed.  The diagnosis came late, though her parents and doctors say in retrospect, the signs were almost always there. She rarely made eye contact; she was sensitive to sound and never socialized well with children.  It was only after a child psychiatrist recognized it, that she got the diagnosis.  During Amanda’s teenage years, doctors, social workers and Social Security services who would provide her benefits analyzed her case and confirmed her diagnosis.

She taught me a lot over the few days we 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. If she saw a flag blowing in the wind, she might start to wave her hand like a flag.  She rides in a wheelchair because she has a diagnosed problem with her motor skills. But she also says 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. I checked what Amanda was writing and saying over and over again. I spent time alone with her, so she could not get any visual cues from other people in the room. It was Amanda, herself, communicating with me through this technology.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis, 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, who has spent a large portion of my life working in the field of brain disease and disorders, and Amanda Baggs opened my eyes about the world of autism.

Programming Note: Watch "Finding Amanda" an Anderson Cooper 360 special report with Dr. Sanjay Gupta, at 11 p.m. ET.

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation. 


April 2nd, 2008
11:43 AM ET

Continuing to place the puzzle pieces

By Dr. Sanjay Gupta
Chief Medical Correspondent
 

Today is the first World Autism Awareness Day as designated by the United Nations.  First off, let me say that at CNN we have been preparing for this day for months, and have covered autism stories for years. Since I have been at CNN, I have been covering autism and I have committed myself to this area of reporting and investigation. If you ask most medical reporters, they will tell you the autism beat is sort of the third rail of journalism. It is so rife with controversy and passionate people on different sides of the issue. If you do stories on this topic, you will get criticized. Period.

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Still, perhaps because I am a neurosurgeon, I have been fascinated with the new brain imaging that allows us to peer deep inside the brain of a child or adult with autism and see the changes that may explain the mysterious symptoms. I will continue covering these stories. Maybe it is because I am a relatively new parent of two gorgeous little girls who jumps for joy every time they pass a milestone and grows a little concerned if they seem to be a little behind compared with their friends. Maybe it is because families from all over the world have sent their stories to me about their own family members with autism.

I have spent a lot of time as a doctor and a journalist with children that have autism. I have walked into those meetings with an open mind devoid of any preconceived notions about what type of person I was likely to meet and what may have caused his or her autism in the first place. As an individual, I find myself less dogmatic and more willing to listen to all sides. I have taken the time to read in detail the 16 best epidemiological studies that exist, as well as the more limited toxicity studies. I have researched studies from as far away as Portugal looking at the incidence of mitochondrial disease and its possible association with autism. I am a better journalist because of it and a better doctor as well.

 Truth of the matter, autism is a spectrum. It is hard to say for sure that someone has "serious" autism or "mild" autism. And, I hate those scales anyway. Truth is, I am not sure my daughter smiled socially at 3 months or she was just happy that I fed her. I am also not sure that her first word came right on schedule. I thought she said "daddy," my wife said it was "cat." We don't even have a cat. Every parent has likely thought about these same things at one point or another.

 As a journalist, especially one with my medical background, I feel responsible to keep the attention focused on this topic. I am delighted that CNN is presenting a worldwide investigation today. Besides the medical aspects, we will discuss the financial, the emotional (did you know the divorce rate has been estimated at 80 percent among parents of children with autism?) and the cultural aspects of autism as you see stories from South Africa, Qatar and many other countries. It is called Autism: Unraveling the Mystery, and I know we won't answer all the questions, but we will make a dogged effort to get at some of the answers – again, with an open mind and with the single purpose of finding the truth.

 We would like your help.

 Post a note here with your thoughts about how CNN should continue the worldwide investigation.

Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.


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About this blog

Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.

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