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.

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. 

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soundoff (68 Responses)
  1. joelle

    Dr.Gupta, I would be happy to be in touch with Amanda if she needs friends. Joelle from Belgium.

    April 8, 2008 at 03:51 | Report abuse | Reply
  2. Phyllis M.

    There are many families from counties all over Florida who have children with Autism and Autism Spectrum Disorders that are being restrained and put in time-out and locked seclusion rooms in the public school system. Our children are being injured physically and mentally because of their disabilities and the lack of appropriate programs and highly qualified teachers available to educate them in the public school system. No laws, no regulations, no tracking system, no consent from parents and no parent notification in many cases. The trauma this has caused our children and the emotional drain to our families should never happen to any child or family.

    April 15, 2008 at 21:12 | Report abuse | Reply
  3. joelle

    Mr.Gupta,do you read this blog?and what Phylis M.says?The only way to help those children is to keep them in public school system with teachers and parents aware of the problem and with some knowledges.
    Philis M.:your children doesn't have disabilities.
    I am from Belgium and here sometimes they put autistic children with psychotic's ones or worth,with trisomics!!

    April 17, 2008 at 04:48 | Report abuse | Reply
  4. Juliana Handoko

    Dr. Gupta,
    Joanna our youngest 12 yrs old girl now, was diagnosed "different" since she was 6 mths old. She did not respond to any sound, light and calls. But she only will smile when we touch her cheek
    The first month of her life, she was so quiet, but almost every night before sleep she cried without any cause.
    During the pregnancy until Joanna was 6 months old I never been sick, so that I never swallowed any medication.
    However, during the 3rd trimester my mom said that my palm was warm, like my body temperature was high, and rarely some blood comes out of my nose. and when my pregnancy was 8 months/32 weeks, I felt that my baby was stretching inside my womb, and hurt so bad. we went to the doctor and I was ready to have the caesar, but the doctor told us that our baby was in the horizontal position (should be in the vertical position with her head down), and softly the doctor pushed the baby to the proper position.
    When the time due, Joanna could not find her "way out" of my womb, so she was born thru caesar surgery.
    When she was 1,5 yrs old, the "autism doctor" said that it needs 6 symptoms to be diagnosed autism, and Joanna does not have.
    Joanna's eye contact only last 5 seconds not more, but she now can speak although not fluently, sometimes the other way around (like : "mommy's skirt... looks like").
    Joanna can not squat stable, has crossed eyes, so difficult to concentrate (so until now still can not read), so hard to remember what we told her to do.
    But according to the allergy test, she is not allergic to casein and gluten, but to asparagus, soy and vanilla.
    Her hair test result showed that her mercury was 1,5 times above the limit, lead and aluminium was 2 times above the limit.
    Now Dr. Gupta, is there any connection between what happend when she was 8 months in my womb and her condition now ?
    I have been searching for the answer, but I could not find any.
    I still give her diet.
    And I am sure that she is still progressing according to GOD's plan.
    It's a miracle that she can walk and talk now.
    We are waiting for GOD's miracle unto her.
    If it is possible, may I have the email address of Mrs. Gay Aguilera ?
    Thank you for your concern about the autism world,

    God bless you,
    Juliana Handoko

    May 8, 2008 at 06:09 | Report abuse | Reply
  5. SYK

    I found these really great audio podcasts on autism on the internet. It seems that lots of Autism Societies around the world are linking to them. I got the link from Tony Attwood's site. Audio podcasts on autism: http://www.mic.mypodcast.com.

    June 4, 2008 at 16:01 | Report abuse | Reply
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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.