Tuesday, February 20, 2007
Behind the veil of autism
26-year-old Amanda Baggs looks at me through the corner of her eye

Watch: Part 1 Part 2
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.

To learn more about Amanda and adult autism, visit CNN.com/Health.
It was interesting to hear Amanda discuss why eye contact makes her feel threatened. One of the main focuses of therapy for children with autism is making eye contact. Perhaps forcing autistic children to make eye contact is doing more harm than good. There is nothing like hearing what it is like to be autistic than hearing the words from a person who has autism.
Showcasing a story like this does not open our eyes to Autism, Dr. Gupta. It does exactly what Amanda Baggs said- makes people thing she's weird or retarded.

I've seen that video on YouTube. It was passed to my by my friend who has an autistic child. I have a son with Asperger's. My best friend has two sons with Asperger's, and a husband with full blown Tourette's (complete with Coprolalia, Echolalia, Palilalia, and all the motor tics you can think of) . All of us did not like her video.

Why? Because it gives the mistaken impression that all autistics are like that. My friend's son has Kanner's Autism. He supposedly cannot speak, will not look you in the eye, flaps his hands, and generally, looks like Amanda Baggs. But Isaac is in there, somewhere. My friend was told to put him in an institution. She instead homeschools him and he can dress himself, make his own sandwiches, and can use sign language along with saying a few phrases. He has astounded his doctors.

I'd say my biggest problem with these sorts of segments is that the average person hasn't a clue about autism or the spectrum it is on (the PDD scale). All autistics are different. They have similarities, yes, but not one of them is alike. It is highly frustrating that if you think you understand autism, you understand MY child.

Hidden? Unreachable? Yes, Dr. Gupta, you've got something there. If we just tried harder... however, so many people don't want to look beyond what they see right on the surface to find the person underneath.
Sanjay---

The world is full of people entrapped in some kind of cage yet brilliant in their own right. Never judge a book by it's cover! We are all so busy with the hectic schedules of daily routine that we often tend to forget that no matter how much alike we are there is still always a difference in every human being. We exist on different levels and our opportunities to experience the world comes to us all uniquely. Never underestimate the wonderful power of being unique. The universe is full of color, personality and diversity. Let us all find the ability to enjoy the various flavors we bring to the world's table.
My daughter has autism and is non-verbal as well. However, she is one of the sweetest kids ever. I know that she is smart, but she cannot convey her intelligence in the traditional methods. Although I can sometimes "interpret" what she's doing or what she wants and why, sometimes, I am at a loss as well. I hope that someday the veil of autism is lifted, and my beautiful daughter can really shine!
As a parent with a child with autism, we truely need to educate people on this subject. There seem to be no tolerance for differences. They may not be able to look you in the eye, but that does not mean they are not taking in every single word you are speaking, and they probably have the answer and cannot find the way to communicate it back to you.
We need to get information out there. If what I read recently (1 in 155 births on the spectrum)is correct, we are looking at a large group of people coming into adulthood over the next decade, and very few people understanding.
My daughter was 4 when she was formally diagnosed as Autistic. She is now 7 and the journey has been both difficult and rewarding. On the very broad spectrum, she is high-functioning but that does not mean she does not have challenges to face daily. If my daughter were to get lost, she could not tell you her address or telephone number. Her sense of pain is high and it is scary for others to see her hurt herself with no crying or words of pain. She is affectionate with people she is comfortable with but has difficulty socializing with children outside of her comfort zones. She refuses to eat new foods so we are forced to feed her weight gain supplements and she has difficulty in transitioning from one activity to the next. But if people took the time to speak with her they would see a very loving and extremely intelligent child. She may have difficulty in communicating with the outside world but you can see in her eyes she has so much to share, if only she could get it out. We are fortunate that she is high functioning because her speech is improving almost everyday and her behaviors are slowly improving. She is extremely social with her classmates and is affectionate with everyone. She is in a special education class but spends half the day with the General Ed. students and loves to participate in dance and singing. Lastly, I have to say I am a better person for having been blessed with this child. She has taught me so much and although I wish she didn't have to struggle so hard, I know she and other autistic children were put on this Earth for a special reason. We have high hopes for our daughter and only wish others wouldn't write her off as "retarted".
Lets see its been a while so I guess I should update this site. Things seem to be moving along rather well for the most part. I took our house off the market. It was up for sale for two years and the market is just so soft that nothing is moving. The city and area is in such bad economic straights that there is a huge amount of foreclosures making this a buyers market. So now, I�m in the process of putting the house back together and unpack all the stuff I packed up so the house would be uncluttered for showing the house. I have decided to do some home improvements on the house, adding a new kitchen and master suite on to the back of the house. I�m hoping to get it done for under 30,000 but doubt that will happen. I figure I will get back almost all I put in, in resale value since kitchens and baths sell houses these days and will increase the square footage by 400 square feet. I�m still waiting for the last bid to come in to decide who to go with and to see how much I will need to beg the bank for.

RJ is doing pretty good. I don�t know if its being aspergian or just being him but he is always so negative. Mike can bitch about something on the tv and RJ auto assumes Mike is bitching at him. I ask him to shovel the snow and you would of thought I just asked him to move Mt. Everest or something. His shrink as part of his treatment said he is to go outside everyday no matter how cold or over cast it is for 20 minutes to get sun and some exercise, again you would think we just asked him to cut his left arm off. The only time he is happy is when he is talking about computer games or eating junk food. School wise he is doing ok� but it is taking him forever to get through his lessons. He complains if he has to work passed 5pm because he needs his free time�I tell him the quicker you get through this the more free time you can have. It�s like talking to a brick wall. He just stares at me as if I�m speaking in a foreign language. Oh, a positive note with him doing the homebound schooling I no longer have to fight with the schools or run up there to get him because of a meltdown. He has gone from a melt down a day to maybe one every 3 months when I start getting on him to get his work done because the semester is almost over and he is falling behind.

He is getting so tall he is almost 5�11� now and about 178 pounds. He gets annoyed at me because I keep asking him to get things down for me or put things back because I can�t reach. Next Monday RJ will be 17 years old�time really flies. He has a pencil mustache and is getting a beard, I keep telling him the mustache is fine but the beard has to go�its very patchy and just makes his face look dirty. With luck in June, he will get his braces off and we will be almost done with the orthodontist. It will be very nice not to have to drive to Battle Creek every 8 weeks.

With RJ not needing as much attention or time do to meltdowns and school issues I�ve started job hunting. I figured since he can do his schoolwork 24/7 that he can start his work when I get home or before I leave for work depending on what my work schedule will be. That way I know he is doing his work instead of hoping he does it while I�m gone, which I know kids well enough aspergian or otherwise, as soon as the parent leaves they do what they want and to hell with school.

It seems my family has started to fall apart�my dad had a heart attack a week ago, this after having the quad bypass surgery about a year ago. My brother was diagnosed with prostrate cancer and diabetes. He goes in for surgery the middle of next month. I guess we are all getting old but stuff like this just a wake up call that people won�t be around forever and this too shall pass.

House work is calling and time to put Mikes coffee on so its hot for when he comes home for lunch. I will try to update a bit more often than I have been. Remember to try and run between the raindrops you will not get as wet that way. :D


Every time I see an article or posting on autism, I read it. My son was diagnosed with aspergers syndrome about 6 years ago. Aspergers is a high functioning autistic which is quite often misdiagnosed because they don�t rock they are usually verbal, they are usually the target of bullying in schools because they are considered odd. The cannot read social situations, facial features so when someone teases them they think the other child is being truthful and takes offense. A lot of these kids are considered �bad� kids and end up in the EI (Emotionally Impaired) classes or kicked out of school for fighting. Children with AS are usually highly intelligent and suffer from obsessive-compulsive disorders, they are stuck on a subject and have a hard time disconnecting from it.
Teachers make their school experience even worse because the teacher refuses to adapt and work around the child�s defects. If they were blind, no teacher in their right mind would expect the child to read a black board, yet kids with AS have a hard time understanding the importance of turning papers in on time and neatly. They have the mentality of if Johnny can do it so can Billy�well Johnny does not have AS. I wish their was more information out their about AS and more teachers were required to study this disorder before getting their teachers certificates. It is so frustrating as a mom to watch my happy baby become withdrawn and suicidal because of the way he is treated in the school system.
My son is now 17 and is homebound school it took him being forced into the EI room with a diagnoses of AI (Autisticly Impaired) to finally get him into a school that understood his condition. Unfortunately, from the years of abuse through the public and private school system we had to resort to homebound schooling.
Autism is at epidemic rates. I believe the CDC now states that 1 in 150 will be diagnosed. This is now a national crisis. Thanks for staying on top of such an important topic. Keep up the good work, I look forward to Wednesday's broadcast.
My 24 yr old son has Asperger's, a form of autism, and has taught me many things as well. He doesn't make eye contact well, and he doesn't feel the "normal" emotions and responses to emotional stimuli that most of us feel. He laughs at inappropriate times and makes some people feel uncomfortable. He has a difficult time finding employment and works at a minimum wage job, but has high normal intelligence and a near photographic memory. He has been turned down for SSI Supplemental income twice, and it's scary for me as a 52 yr old single mom when I think of what's to become of him when I can no longer provide a home for him. America must address the issue of Autism in adults. Nearly all of the existing programs are for very young children and are geared to identifying those who has this disorder. Well, once you have been diagnosed and are out of the school system, then what? These are wonderful, intelligent, and skilled people whom no one will hire and who can't make enough to support themselves. They fall between the cracks. I would love for you to address this issue. Thanks!
Thank you for bringing us Amanda's story. As I'm reading, I am somewhat disappointed not to see a bit of her story in her own words. She seems to be a very determined, articulate, and resourceful woman.

As an adult female with an autistic spectrum disorder I also empathize with her desire to connect with others, and to meet the world on her own terms, despite society's misgivings and value judgements about her struggles and the unusual ways in which she solves these problems.

All too often we as a society focus on the remarkable gifts of some autistic people, but the truth is, most of us do not have a "savant" talent and yet still need considerable assistance and accommodation in the communications, multitasking, and social realms. The public perception of adults with Asperger's and autism remains skeptical, and we are still often accused of all variety of malingering or antisocial behavior at work because we do not multitask well, have problems communicating, or become distracted by the dull buzz of a faulty fluorescent light.

I tell you this because I also have full medical training but cannot practice, because the ordinary Herculean struggle of adequate clinical communications and multitasking in internal medicine residency became absolutely impossible after even a single sleepless night on-call. No training program in the country will accept an applicant who cannot take overnight call.
This is a very nice blog. = ]
Well, with my work at Autism Speaks, I have seen similar stories of people dealing with this disease. I think that medical reserach has a great task ahead of it as the current theories are wide and sometimes conflicting. However as I have learned, early diagnosis and special intervention may help some learn to adapt to new ways of learning. My experience also brings up the fact Autism is now on the rise as my own nephew in Pakistan has been diagnosed. However, it took forever for the medical community of a thrird world country to diagnose the disorder. It is good that organizations like Autism Speaks will branch out on the international level to increase awareness.
I HAVE A DAUGHTER WITH AUTISIM STACIE IS 35 YEARS OLD. SHE ALSO HAS MULTIPLE SCLEROSIS. SHE IS NON VERBAL AND CANOT WALK BECAUSE OF M S. I HAVE BEEN TOLD SHE IS MENTALY RETARDED AS WELL. I KNOW SHE ISN'T. I PRAY THAT SOME DAY THEY WILL FIND A CURE.SHE ATTENDS A DAY PROGRAM AT RACHAM FOUNDATION;
Thank you Sanjay. I'm looking forward to watching this very interesting segment. I am a Special Education teacher who has worked with several autistic children over the past few years. The questions surrounding the true ability levels and self-awareness of persons on the Autism spectrum; what doesn't show behind their apparent difficulties in communicating is something that continually tugs at me and many other educators and therapists. There is so much we still need to learn about the condition of autism and how people on the spectrum cope and manage.
Excellent choice for an interviewee.

I've known Amanda through the Internet for about three years. I think she is one the most generous and kind (not to mention intelligent) people out there, other autistic people have been very generous with her, too, as she will tell you. She and the other autistic advocates challenge and disprove many stereotypes in a very compelling way. Are autistics cold hearted and empty? No. Not at all. They give of themselves. I hope more people will listen to the autistic adult advocates the way you did, Dr. Gupta. Fortunately, the words of autistic advocates are quite available on the Internet.

A site that Amanda helps to maintain, autistics.org is an excellent place to start. gettingthetruthout.org is another one. Amanda's blog is called "Ballastexistenz" and her blog and other interesting and helpful blogs are easily found through the Autism Hub, autism-hub.cu.uk

Other than websites and blogs operated by autistic self advocates, or their allies, other autism websites (usually run by organizations or shady salespeople) are rarely worth reading. They tend to be full of, or badly peppered with, BAD information about autism.

Before anyone jumps on Amanda for not being a parent and not understanding the feelings of parents, (lets just make it clear that that's a lousy argument), it's good to remember that many autism spectrum self advocates ARE parents of autism spectrum (and typical) children and so they can speak about autism as parents, too.
Thank you for sharing this story. My son is non-verbal Autistic and he is so smart. I wonder how many children we have brushed aside and not helped them reach their full potential just because they can't communicate? It is apparent that Amanda had someone believe in her. Someone in her life sweated blood/tears to give Amanda a voice.
I wrote a book called "Learning to Live with High Functioning Autism." If I was writing it today I think I would change the title. If you are seen as high functioning you do not get the services you need. If you are seen as low functioning you do not get the respect you deserve. The problem with 'high functioning' and 'low functioning' is that they do not capture the complexity of being autistic. And if you say that someone is not low functioning because of their ability to communicate intelligently, is there a danger that you might use that label on people who were less accomplished communicators, implying that they are less worthy of respect?
My 5 year old son has been diagnosed on separate occasions with PDD, apraxia, or developmental aphasia. The only thing the medical experts have agreed upon is that he requires speech therapy as his expressive speech is at about a 2 1/2 to 3 year old level. He receptive speech level is higher but not to his age group.
We have placed our son in a school for autistic children and he has made progress. To date, we have received no insurance help as his condition is considered developmental, therefore it is not covered. The financial burden is slowly destroying us and we are trying to figure out what options we have.

In my opinion, there needs to be action at the Federal level requiring states and companies to cover insurance claims that relate to developmental issues (speech therapy, occupational therapy, ABA, etc.). Having my health care insurance company cover my son's speech therapy sessions would dramatically improve our family's financial situation.

Could you tell me which states require insurance companies by law to cover the therapy (speech, physical, etc.) needed to help a child with autism and/or apraxia? I know New Jersey is one and I believe there are 8 states within the USA that require insurance to cover developmental issues.
As a substitute teacher in my town here in Connecticut, I have had the chance to interact with many children that have been diagnosed as autistic. I am amazed at the spectrum of the disorder - these children are so different. I see the extreme intelligence, and the social component lacking, as is typical with many autistic children.
I also see that the program we have in place in our school system really does help these children develop to the best of their ability (I work mainly in the K-2 grades).
What distresses me most, however,(and the school staff that I've discussed this topic with), is that we have a much higher incidence than even the revised NIH/CDC numbers indicate. They say about 1:150, which would translate to one autistic child for every 7 classes (we have roughly 20 children per classroom). I see us having about one in 30, possibly more. I see about one child per classroom, sometimes more than one, dependent on the teacher's abilities.
I don't know if it's because we're known for having a good program, or what, but I do believe that the Federal Gov't should request numbers from all the school systems nationwide to get an accurate handle on the number of diagnosed cases. I think we would be shocked to know that we have an even greater problem than even the new numbers suggest.
With proper intervention these children can be productive citizens, like Amanda, but it requires knowledge, which means research dollars spent. And only once the Government understands the actual numbers involved can the appropriate amount of money can be spent on research.
I'm currently a third year Pharm D. Candidate at the University of Georgia and this article caught my eye because in 2 weeks I will be giving a 30 min. seminar on Risperidone's recently approved indication for treating Autism symptoms. =)

Dr. Gupta, you wondered how many other people like Amanda are out there. Autism is prevalent in children and 1 in every 500 children are affected. Currently 1 in every 150 children in the U.S. has autism. Surprisingly, this disease can be accurately detected as early as the age of 1; unfortunately, only 50% are diagnosed before kindergarten. As you stated, these individuals are hidden and I agree that they can be reached easily. If diagnostic procedures improve and are performed at earlier ages then I think the progression of Autism can be greatly reduced because treatment can be initiated at an earlier age.

Unfortunately, Risperidone is not the perfect solution either because it has shown to be only effective in treating 3 of the 5 main symptoms of Autism which does not include language skills and social relationships/interaction; however it has been shown to be beneficial long-term!

Thank you for sharing Amanda's story! It was very touching. =)
I have a 6-year old son with autism who is non-verbal. He was diagnosed at 18 mos when he lost his language skills. Although he was immediately enrolled in Early Intervention services and is now in a private school for the autistic he does not speak a word, but there is no doubt that he is intelligent. He gets very frustrated and beats himself in the head when he cannot communicate his needs/wants, which is heartbreaking. Reading Amanda's story gave me hope that one day he will be able to communicate with us and that there is a reason for some of his �quirky� actions.

Thank you for sharing Amanda�s story about the issues around low functioning autism. Most stories I read and see are about the higher functioning "miracle" children that have been able to overcome their issues enough to function in society. This is not the case for many, including our son. I look forward to seeing tonight�s segment on AC 360.
Thank you.

I have a 3 year old boy with autism. We learned about his condition when he was 2. Initially, I fought his symptoms with every fiber of my being. Then, I learned to redirect. Now, I'm learning to accept. With therapies and other methods, he's learning to communicate. Watching this video gives me MORE hope.
I'm excited to have adult autistics sharing the way they look at the world with us. I have a 12 year old son with autism, he has some spoken language. I know he sees the world different than I. I have been saying for years that technology will permit our autistic kids to communicate in ways that they cannot today, it looks like we are getting there. I also feel blessed and honored to be the mother of such a unique child. He has some challenging behaviors and we work through them on a daily basis. His Dad and I are in awe of the simplicity he brings to our lives. Thank you for
the story on Amanda.
Sanjay - This reminds me of a very touching story about autism that I read called "A Child of Eternity" by Adriana Rocha and Kristi Jorde. It will really open your eyes.
I am a speech/language pathologist working with autistic children, and they have this in common: they are each unique. I believe that their range of intelligence is just as wide as that of the neurotypical population. There are five modes of communication--sign/bodylanguage, speaking, listening, reading, and writing. You need at least one receptive and one expressive mode of communication to work in order to be able to reach the outside world. Amanda can hear and read, and she can write. She is a successful communicator. However, there are individuals who may have difficulty with all the modalities. And there are individuals in betweeen. That is why there is no one size fits all therapy or magic bullet "cure" for autism. The parents who are working with their kids as individuals are on the right track. The corporations who allow their insurance coverage to deny these children services are shortsided and cruel.

I recommend a book by Temple Grandin and Sean Barron "The Unwritten Rules of Social Relationships" for other perspectives from autistic adults.
I have a 9 year old son with autism. He is almost totally non-verbal, socially very shy but also very well behaved. He was judged mentally retarded by his former school in Morton Grove IL just about one year ago even when we were insisting that he does many more things at home. The school did not want to accept the fact that what we did at home was any good and like were were told "we are also professionals"

We bought a new home to move to Glenview IL; another shcool district and here he has thrived and does classwork at his grade level and 3-4-5 grade levels above him. He needs help with communication and communicates with writing and is now begining to do some assisted typing and using voice synthesizing. During weekends he ice-skates, swims and goes for gymnastics

From a label of autistic and mentally retarded to autistic and smart was a big struggle for us as parents. I am glad that socially more of us have started undestanding and accepting autism
As a parent of an autistic child who was diagnosed PDD/NOS and is mild to moderate on the scale of functioning I am having a hard time digesting the fact that doctors refer to her as 'low functioning'. Maybe because she's female, but my son has nowhere near the skills that she displayed in this article. "It's like being bilingual," she types. "A lot of the way I naturally communicate is just through direct response to what is around me in a very physical sort of way. It's dealing with patterns and colors rather than with symbolic words."
That's a pretty in depth way to explain what she's thinking, even if she can't verbalize it. The kids I know with severe autism couldn't sit still long enough to type that out. Interesting. I wonder when her diagnosis was made?
I like the fact that more and more people are coming to understand Autism. As a mother of 2 children with Autism, it has been a long, hard road very much complicated by people who do not understand. Maybe with more understanding there will be more tolerance for others that are different.
All of a sudden, stories about the high autism rate among children have been popping up, but it is important to note that autism is NOT a new disorder that is only affecting the "next generation." Autism is just as prevalent among adults, especially if it is genetic--the gene didn't just magically appear in the children of this generation. The only reason the rate seems to be increasing in children is because we only now have a good working definition to use in diagnosis. After all, Amanda herself is 26, and there are plenty of other adults out there with autism (of varying degrees of severity) who have never been diagnosed. It is great to focus on children because early intervention currently seems to be the most effective treatment, but we also need to come up with ways to treat adults... not only will kids with autism grow up to be adults with autism, but there are ALREADY probably about 1 in 150 ADULTS suffering from some type of autism. These adults are probably suffering alone, watching on the sidelines as the world slowly wakes up to the "new" crisis of autism in children. At least, I know that's what I am doing, as a grown woman with Asperger's who happened to be born before autism was a recognized disorder and missed out on all forms of early treatment. Is it too late for autistic adults to get help and attention? I hope not.
AJ IN HOUSTON: I know you asked for info on what states make insurance companies cover speech therapy ect for apraxia and the like and I wanted to tell you, Texas (I live in Dallas) covers it at the county level. Here in Dallas they call it ECI for Early Childhood Intervention but all counties have to provide services for developmental and/or physical delays... when you have insurance alot of times people assume it is covered so they don't think to tell you about the county funded programs. You do have to apply and it is sliding scale but then also, once they start school there are other 'free to the child' therapies if you know to ask and keep bugging people. I have apraxia, dyslexia and aphasia and my mom had to fight every step we took to get me the speech and developmental therapy that tax dollars pay for, but it is out there. One suggestion on the apraxia, learning sign language helped me a great deal... I could think of the word but just not get my brain to vocalize it and when I could spell it out in sign language it triggered me being able to speak it with (after many years of practice- I am 35 yrs old) with no noticable pauses. Both our children are in speech therapy and the school says if our daughters letters don't turn around on a consistant basis by next school year they will be placing her in the dyslexia program. There are no charges for services provided through the public school system and even if you homeschool or send your child to a private school, your child is still entitled to recieve services from the public school system.
Autistic is the new Gay

I find it apt that you use the word "veil" while describing autism. Veils speak volumes, and are often misunderstood by people who are not familiar with them, see them as a wall, a mark of separateness taken on by choice. Whether you are wearing one or looking at one on someone else can make all the difference.

My son Nicholas is autistic -- as one of the "bright ones" many people assume that if he tried hard, really wanted to -- he could choose to leave autism behind, they don't see what doing that would cost him if not "looking autistic" was even possible. He describes autism as "the new gay" -- something people are asked not to flaunt, to hide, to try not to be.

I hope for a world for him -- and for the people who come afterwards -- where Spectrumphobia will be seen as just as unenlightened as homophobia, outside of the behavior of the everyday society.

JulieB
I have a seven year old grandson with Asperger's Syndrome.
He is one of the brightest children I have ever seen goes to a regular school, but he is continually demeaned by his teachers. He's not unintelligent, just the reverse, he has a remarkable use of the English language and an extaordinary imagination.
His only faults are that he won't look you in the eye for more than a few seconds, and his social skills are lacking due to his Asperger's. Also, sadly, he doesn't give tight hugs and will only oblige when asked. My first words to him when entering the house are "Hunter, give Gramma a squeezer!" He smilingly grabs me around the middle and squeezes the heck out of me. Amanda Baggs is a remarkable young woman. Thank you for bringing an understanding, if there can be one, of Autism to the people.
Dr. Gupta,

As a professional (nurse) and a parent of a young daughter with Autism Spectrum Disorder, thank you for doing this story.

Our daugher was though, and we were told, she was severely mentally retarded, a fact my husband and I having clinical expertise in the field of developmental disabilities, knew was false.

We fought for years and finally, at the age of 19, our daughter found her voice through use of assistive technology.

Instead of doing one didgit math and spelling cat and dog over and over, she proved how gifted she was. Having never taking any meaningful courses in any year of school, she took two college semesters of Philosophy and then went on the take English Comp (a prolific writer we discovered) and Public Speaking and then Media Criticism. She hopes to pursue a doctoral degree in communication and has spoken (via assistive technology)to groups of educators, phychologist, speech theapist, etc. and an several conferenced. She now actively participates in all her life decision, including health care.

You may want to visit the web site of a group of indiviudals in Pennsylvania called the Lonesome Doves, a group of individuals who were diagnosed with all levels of autism and mentally retardation.

There are sooooo many wonderful life altering stories out there - you just have to keep looking.

Thank you again.
I'm surprised someone with a child on the spectrum would be so harsh in criticizing this story.

Autism is a SPECTRUM disorder. There are so many different aspects to it. Should we focus only on cute children who make for good TV?

While my child is considered high-functioning, I think it's important to be aware of and learn about as much of the spectrum as possible. There is so much to learn from everyone who is generous enough to share their story.

I understand the concern that seeing people like Amanda will make them think "Rain Man" all over again, but does that mean her story shouldn't be told? I don't think so.

I believe ANY story about autism these days provides some sort of education for the general public. Whether it's about a child with Asperger's or a teen with PDD-NOS or a more severely affected adult -- the current information is nearly always included. 1 in 150. People are finding out. Either through stories like these or from people they know who have loved ones with autism.

No, not all people with autism are affected like Amanda. But they're not all like a child with Asperger's either. Every story that's out there tells people about autism. Hopefully, it'll get them to ask questions! Or get us to start the discussion with people who don't know.

People need to become more tolerant. Period. It concerns me that this apparent attitude of "don't make it look bad" exists within the autism community itself.
I personally, grew up with Asperger's Syndrome, and while I was in middle school, I had educational support, and it helped greatly to overcome the behavioral problems I could have developed. Something that truly helped me throughout school, and in college is memory and pictures. Though I don't use it a lot now, memorization is one of the tests that I had, and this also was part of my persona. I am now a Digital Media Major, with a focus on photographic manipulation in college. This article is very inspiring, and truly brings out the quality that Autistics can bring to this world if we let them. I myself, as an artist, have attempted to work with visual images as well as words to communicate, however, I'm not a writer or novelist. I'm simply highly artistic, and helping people is one of my inspirations and aspirations.
I am struck by the posting by Kelli Anne from Maryland. She notes that not all people afflicted with Autism is a "Savant", I believe she counts herself among that group. She obviously doesn't recognize the intellectual she has that allowed her to attend and pass medical school despite all of her special challenges is far beyond those of "normal" people. It is so frustrating to me that our society can't find a way to harness the talents, and special abilities of autistics like Kelli and so many others. They all see the world is such a different way that the normal, but so did people like Albert Einstein. Who knows what astounding accomplishments, the cures for Aids or Cancer, the solution to unified field theory, who knows lies trapped within their minds. Unfortunately in our society if you are a round peg and can't fit into the square peg hole you are considered "disabled" or worse. What kind of fortune awaits the entrepeneur who finds a way to tap into this talent pool?
I have a daughter with autism. She is now 6 years old. We started treating her biomedically at 18-months. I have seen Amanda's videos on Youtube, and I am very impressed with her. However, I am very frustrated with the fact that I NEVER hear anything about biomedical treatments for autism on TRADITIONAL television and media. My daughter has made such strides through biomedical, that she is now in kindergarten, and only spending 2-hours a day in resource. She speaks all needs and wants and socializes as well. All of this happened with biomedical intervention, and to such an extent, that I was asked to speak to the county Early Intervention Program about my daughter's amazing changes. You are doing the autism segment a HUGE disservice to not mention these interventions, and the problems that may have caused the need for these interventions.
As the father of a six year old son with autism, I wanted to thank you and the rest of media for drawing more attention to this national epidemic. Autism dignosis continue to increase and no one seems to know why. For years the medical community was very quick to say that it was not a medical issue, but we are slowly realizing that is just not the case. I hope and pray for a day when a cure can be found for this terrible condition.
Hmmm...I think alot of what is classified as mild Autism is damage from a culture that forces you to be marketed to and to market yourself. And it starts from birth!

This marketing is 99% negative. We're always not good enough and always in peril according to what they tell us.

I'm sorry this is NOT normal: it is abusive, elitist, treacherous and full of hate. It's a wonder things are not much worse given these circumstances.

It's time the abusers of our tolerance were taken to task.
I would like to see more companies hiring and making accommodations for people with disabilities.

There is no reason that someone who can type should be denied job opportunities in today's world.

I also would like to see more companies think aobut implementing flexible schedules for more employees and offering more part time work. Sometimes endurance is the biggest prohibitive to working.

There is nothing worse than being trapped in a location without access to any kind of communication with the outside world. I know people who refuse to get their children communication devices (or attempt teaching them sign language) because they figure their children will just end up in Nursing Homes anyways.

By forcing Autistics to not have working as an option we are eliminating a vital part of our potential work force.
We are still working to improve both the environment (society) and our sons (PDD NOS) ability to live within this space we call life. Amanda is one who can help us all understand how it is to think and feel differently. She and many other individuals with Autism Spectrum Disorders can help us understand better how we all interact with and fit into this world. I have huge respect for anyone who continuously contributes to the real voice of Autism, and it had helped our family by giving us the encouragement to continue to help our son be the best that he can be. Amanda Keep on keeping on!
In response to Sharla Jones who posted "Showcasing a story like this does not open our eyes to Autism, Dr. Gupta. It does exactly what Amanda Baggs said- makes people thing she's weird or retarded."
I really think you missed Dr. Gupta's point. I think his point was that in the past (and present) people mistakingly wrote off anyone with any type of Autism as being unreachable and therefore different and therefore "not like us". However, Dr. Gupta first had the opportunity to meet Amanda in a world in which she has found the ability to communicate, via the computer. This relatively new medium of communication opened a new world for Amanda, and for those that are blessed to ineract with her. Imagine all good that can come out of Amanda's story being nationally broadcast, if even just one MORE person living with Autism figures out how to have their own voice heard. Even though not all people are the same, imagin all the good ideas that can be born from this segment. Imagine all the good that will come out of Amanda's story because of all the Doctors, and Social Workers, and Nurses and Teachers, and Neighbors, and Social Security officials, etc... who can gain a better understanding of what it is like to live with Autism (even if it is just one form of the disorder).

I cannot begin to understand the frustration you must feel. Please remember you DO know much more than the general public about the spectrum of Autistic Disorders. You've had to take a crash course in order to be the best parent you can be. Segments like this let the general public, including neurosurgeons, pick it up piece by piece.
Good Afternoon,

I have a 19 year old son with Autism. He is what you would call high fuctioning. (This would not have been possible without the help of some very caring people in his school system, see my son was a novelty. When he was young Autism was not really heard of where we lived.) This was not always the case. When he was very young he would not speak, he would make noises and point for what he wanted. There would be no eye contact. He would close down and go into his own world. Human contact was something he did not what. I would try to make eye contact with him, but this was not going to happen.

Then as every cloud lifts and the sun shines through things began to change. He did not change we did! We decided it was more important to have him speak to us than make eye contact, this made a difference. He had many years of speach. Though he still did not like to speak, he would.
We allowed him to take us in his world. One big change we made was not to say bad or good, we change it to apporite and not apporite. these small changes open up a world to my son.

He has graduated from High School (life skills program). He is now attending a program called ACE which is teaching him social skills and how to get a job and live on his own. He will always need some help.

I still long to hear the words every mother wants to hear I LOVE YOU.
I am going to go against the grain here, as I think there is nothing unhealthy about autistics disagreeing in public.

As a media studies graduate, who is also autistic, and who does not subscribe to notions of high and low function which are manifestly absurd, I can say that the severity of ones autism is not necessarily what one wears on ones sleeve.

As a long time disability activist and subscriber to the social model I will say that this is an appallingly bad piece of journalism.

I have known Amanda as a fellow blogger for some time, but what I see here in the blog is a focus on the unnecessary not the message of autistic rights.

What the heck does it matter if you don't get eye contact in an interview. I have been interviewed behind my dark glasses, have even lectured behind them and made a video of much greater sophistication than you see on the average blog where I take apart these media manipulations and cliches. http;//www.shiningcityvisions.com

Make no mistake CNN have done a job here they have devalued the message by making too much of the inessential.

In many respects I might appear as "wierd" as Amanda but I don't think people notice anymore because what is important is the message not the medium.

My mother was a disabled campaigner too, she resented anything that focused on the impedimenta or surface appearance of disability because that was not what mattered, each person has a different appearance of disability but the common experience of being exploited by the media, or being tokenised and not taken seriously is what she spoke about.

This is not a piece about the ordinariness of difference, I do not see Stephen Hawking portrayed in such a way, what he says demonstrates his intellect not how he says it.

It matters not whether Amanda is typing or speaking, what matters is what she is saying, but this article is far to interested in the freak show element of autism, the performing dog element as Dr Johnson put it famously.
I am a 2e (twice exceptional) student - I am considered "gifted" but also autistic. I am 10 and in Junior High. I liked Amanda's story because she is more like me than not.

Of course, most people are more like me than they admit. If you want to know more about my world - check out my blog which is www.GiftedGearReview. blogspot.com.
I think that it is important to recognize the full spectrum of people with autism spectrum disorders. Some advocates will try to argue that all people with autism are "train-wrecks" and a drain on society. Yet, all people with ASD have many things to offer society, and many have special gifts that set them apart from average people. One of my favorite quotes about autism comes from Temple Grandin, who said, "What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done."

I think that in this age of genetic screening, we ought to be careful about who we want to eliminate from the diverse gene pool that makes human life so full and diversified.
This is groundbreaking insight into autism. Amanda's statements are truly profound and have helped me understand the nuances of how those with autism experience the world.

Thank you to Dr. Gupta and Amanda for giving me a personal and eye-opening perspective. Thank you Amanda for reaching out.
I am looking forward to your show, Sanjay. I posted her video on my blog weeks ago and have used in my presentations about autism.

I hope this begins to change views, (do you remember writing to you about The Autism Acceptance Project)? I have an autistic son and want autistics to participate in every aspect of decisions and policies made about them. In Canada, this does not happen yet at all. We are dealing with prejudice, plain and simple. Prejudice that autistic people, and all dis-abled people for that matter, that they are less worthy. We have to talk about this attitude, and what actually makes humans, human. In our quest to control the "knowing," the science, what is our collective responsibility to protect and cherish all human life and thus, human spirit.

This is missing in all discussions about autism. Autism is portrayed as the worst possible disability ever. Yet we have autistics on our board of directors. I have an autistic son. I've met so many autistic people over the past three years and I think I am better for it. It has taught me more about what it means to be human.

WE have to put the Personhood and dignity back in representing and talking about autism. Autistic people do not wish to be not autistic. They wish to be accomodated and educated and be viewed as whole, not broken people.

I'm crossing my fingers for a fair show.

Estee Klar-Wolfond, Founder and Executive Director
The Autism Acceptance Project
www.joyofautism.blogspot.com
www.taaproject.com (The Autism Acceptance Project
Amanda is a remarkable person and i'm happy that modern technology makes it possible for her to communicate.
I wonder if Amanda could better help us to understand the vastness of the human mind.
We are to quick to make all conform to what we consider to be the "normal" view of the world and force an appropriate response.
It would be good to know how Amanda sees values, philosphy, her perspective on wisdom literature and how she preceives herself in her world.
This might offer insight into the workings of the human mind and greatly add to our knowledge of human behavior.
I wonder if Amanda has been tested for Prader Willi Syndrome.
Dr, Gupta, I can't express how touched i was by not only Amanda's story and of your thoughts of her, but also of the many comments of others. It is especially touching to read the comments of people who are living with spectrum disorders and of the family of those as well. What a blessing to hear, as the parent of a childre who wants to help him have the best life possible. Perhaps God put Amanda and her work on Youtube to reach sand unite so many of us who feel we are struggling with this misunderstood syndrome alone. It was also interesting to read the comment about autism as the new "gay". perhaps now with the miracles of thechnology our family members don't have to be subject to this kind of fear and prejudice as they have in the past. Bless you and keep up the great work!
I have a friend here in my hometown of Colorado Springs, CO. He is the same age as my husband, 33 years old, and has autism. He is tall, smart and very sweet. When he speaks, it is with a rather shaky sound to his soft voice. He also has obsessive-compulsive disorder, in his case, with names.

He gravitated to me because my middle name is Angela. He loves anything to do with angels, or God, or Christ. So we became friends because of my middle name (it also didn't hurt that my father's name was Angelo and one of my children is Angela). But if a name has "hell" somewhere in it (e.g., Michelle), he won't have anything to do with that person.

Although one day I pointed out to him that "Michelle" is the French feminine version of "Michael," who is the Archangel. That surprised him! He actually sat down and talked with a woman named Michelle on the strength of this!

The one area where he excels is with music. He has his own mixing board, lots of different recording machines and tapes, and hundreds of vinyl albums. If you get him to talk about music, his voice changes. It smoothes out, it won't have that "scratchy" tone to it at all. I think music is his greatest expression of who he is, because it is what he loves best. He's also wonderful with computers, which knowing his love of music, didn't surprise me.

He lives in his own apartment, is involved with Special Olympics (basketball is one of his favorite sports), and simply enjoys his life. He's a great guy, very sweet, and I am better for knowing him.
It is interesting to me to see that no one who commented on this story mentioned what it is like to actually raise a child with autism. My son has high-functioning autism and we sought every treatment available for him that we could afford starting at age 2. He is very intelligent and has a photographic memory. His lanugage skills are very good compared to many autistic children. However, his behavior is extremely difficult to deal with. He used to throw everything in sight at the walls and at people. He would destroy toys, books, furniture, etc.. He would keep us up all night several nights a week. We were at our wits' end and couldn't get any help from the school district or the various psychiatrists we had taken him to. The last straw came when he seriously beat his toddler brother (he had a knot on his head and bruises on his back and arms) with a toy block, then the next day shook and hit our infant son. We decided that for the safety of our other children, the best thing was to turn him over to the state. He is now living with a wonderful foster family (the mother is a special ed. teacher) and his behavior is much better. I have to live with the pain of knowing that I no longer have my oldest child every day, and I don't think I'll ever get past that. My two younger sons are doing well though (neither has autism), so I just try to enjoy every moment with them and be thankful that all of my children are now safe and happy. The federal and state governments definitely need to develop more programs for children with autism, particularly programs to help with serious behavior issues. Scientists also need to do everything in their power to find the causes of autism so that we can find so way to prevent this. With the rate of autism increasing every year, we may be facing the end of our society as we know it within a few decades if we can't stop this epidemic.
I'm very glad I saw the post at The Gimp Parade (thegimpparade.blogspot.com) mentioning this, so I'd know to go check it out!

I'm also an Autistic, though I speak only part-time. I was extremely lucky that I was born with physical disabilities to highly accepting parents; as firmly directed by the doctors from day one, they knew that it would be best if they encouraged *my* developmental path as it unfolded, because I wasn't "other kids" and never would be. (I think having the big physical aspect helped them really grasp that, as well as to be happy with what they had rather than miserable about what I wasn't!)

I was also very lucky to meet other pro-acceptance Autistics online in my mid-twenties, then more specifically Amanda. At first, they helped repair the horrible self-esteem damage done by a NT I had dated, then even more as the Autistic I started dating began echoing very similar things said to him as a boy. While I also got support from my NT female friends online, the Autie ones were able to truly empathize. (As I have said to newbies, you can't tell what *any* of us are like based on our language skills.)

What is very disturbing is that the way I see most people speak to Autie kids is exactly how I was talked to by my exes... That how I felt was wrong, how I reacted was wrong, how I showed love was wrong, how I needed to do or tolerate various things that made me miserable but would please them. Even if that is all well-meaning -- both ex supposedly loved me at the time, they both thought they were saving our relationship or helping me "grow" -- it still does catastrophic damage.

So now, a few years after my second relationship crashed, I'm finally regaining my self-worth.. But it's not because I've tried to appear more NT, as that would have really destroyed me. It's because people like Amanda were there to show me firsthand that it's OK to not be NT, parents that agree, NT friends that agree, and even a lot of NTs I've met in person that verified it. I feel deeply sorry for the Auties growing up without that, and worry about all the ones that never find their way to the Autistic community.
Sanjay,
I was stunned to learn when I got into the workforce to learn that not everyone thinks in images. I was having trouble understanding a simple concept about something, even though I have a PhD in astrophysics (the career field with the highest percentage of lefties). My manager laughed and asked if I was left handed. I said I was but that I had been forced to switch to my right hand in the 3rd grade by a teacher. He then told me that generally left handed people think in images and right handed people think in words and I wasn't getting it because I wasn't seeing it in front of me. I also have balance problems that I'm told people who are forced to switch which side of their brain is dominant have... Something about your inteview with Amanda resonates with the way I experience reality- that makes me wonder, has anyone tried taking autistic children and forcing them to switch to their right hand to force them to be more verbal? (I'm assuming they are left handed- if not, if autistic people are right handed, are they kids that were shamed very early on into not using their left hands (maybe even just unconciously by looking around them?) but don't have an many connections between the hemispheres of the brain that most lefties do and so are the small percentage of people who have severe impacts from doing so?) Call me crazy but I think there is something to this, I was surprised to see info on autism on hyper-sensitivity to the environment and I have some of the same symptoms but much less than someone who is autistic, but I don't remember having them before switching hands....
Dr Gupta, I am truly fascinated by Amanda and her remarkable way of being able to communicate to the world. She has opened my eyes to the wonder of Autism .Thank you.
As the mother of a special 9 year old son, who just happens to be on the Autism Spectrum, I often find myself somewhat envious of the mother whose autisic child is non-verbal. Why you may ask, would I wish to never hear my childs sweet voice? My answer is always the same. Just because my son is verbal does not mean he understands and processes language appropriately. I find that many times I have to interpret for my very "normal" appearing son. Conversations are usually one sided, and often times they are very frustrating for him.

I for one am tired of the lack of concern from family members, school personnel and neighbors in our community. Yes my son looks like a normal 9 year old, and yes the tone of his voice is for the most normal sounding he is anything but normal. I feel just horrible for saying that, but please tell me what part of normal is smearing feceses on the wall because you have difficulty sequencing the steps of bathroom hygeine? Or what part of normal is soiling your pants because to leave recess would mean certain doom? I have been told by another mother from our support group whose son is considered "low-functioning" that she feels that having a "high-functioning" child would be much more difficult. She said at least they know what the future has in store for her son. Not so with the higher functioning. We don't know what the future holds for my son. I recently heard from an Autism consultant for our state that those individuals with Asperger's and "high-functioning" Autism are the most un-employed and under-employed. To me that is a very sad reality. I am afraid that this reality will continue on if those individuals are not taken seriously and allowed the much needed supportive services that will help them, even if they don't look Autistic.

Thank you Dr. Gupta for introducing us to Amanda and thanks to her for sharing her story.
Dr. Gupta-
I am one of a group of parents to whom Amanda is no surprise...my son is so called low functioning- is 6 years old and learning to spell on a letterboard-hundreds of students are learning this with the help of a mother originally from India-Soma Mukhopadyay...who has pioneered RPM...an academic teaching method which encourages cognitive growth, based upon the unique way each autistic persons brain is wired, and the sensory challenges they deal with everyday...thru her clinic in Austin, Texas parents from all over the world and the country,like us, are being given the opportunity to help our children learn and communicate...children who have been called "low functioning," and all but given up on by therapists, educators, and other service providers.
This is a term- low functioning- which is used by people who can only see the "behaviors" and not the individual. The outward functioning of the human body is not an indicator of cognitive ability.
Sincerely, Shazia Dahar and Irfan Dahar,MD
My soon to be, 26 year old son was diagnosed with autism at around four years of age. As with many non-verbal
autistics he spoke early and gradually
lost his speech entirely at around 18 -
22 months of age. Unfortunately, early on, he was misdiagnosed as hearing impaired or possibly esophagal or vocal chord damaged resulting from earlier,
nearly constant, vomitting after most every feeding, which many Drs. thought was probable cause for his delayed speech. Everything from acid reflux disease and allergies to being lactose intolerant (which he was). I feel the sudden increase in autistic diagnosis is due to the fact that as with many other diseases or illnesses, healthcare workers are becoming better informed do to stories such as Amandas'. Whether high or low functioning, mentally retarded, or whatever label is used to describe the many spectrums of autism. Amandas' story can only help others as it draws attention to the total problem which not only causes laymen to respond, but also keeps professionals in the field discussing the story with parents or with others in the field. Unfortunately, the old adage about the "squeaky wheel getting the grease" is usually the case. So whether you agree or disagree with the story of Amanda it is making people talk about autism which can only be a positive thing.
Has anyone ever done a study on how population density affects sociability ? I've been living a decade in a country that has a population significantly over 1 billion people, and it APPEARS that the AVERAGE person here has well defined social skills while interacting in groups,but these tacitly understood social skills seem to be less robust when interacting one-on-one. This observation, among others, makes me wonder if population density is a significant environmental factor...?
We should stop trying to worry so much about the so called deficiencies or challenges that an autistic person has, and try to comprehend the way they try to communicate with us. It is not about accepting them, or teaching kids with autism how to be accepted, it is about learning to communicate in their language. It�s about loving them for who they are. If we wake up in a strange country, where people speak a different language, and have different mannerisms we would make an effort to learn to communicate. Well, let�s concentrate in learning how to communicate with our autistic love ones instead of trying to make them fit our definition of �normal�.
Amanda is amazing. I am American but living in Japan. My Japanese is not very good and many of my cultural and social preconceptions do not fully adapt here. I've had to learn to adjust to differences in communication, point of view and outlook. In doing so I've learned that normal is relative and preception specific to each individual. I am grateful to Amanda for sharing her world with us. I hope the lessons in her video are taken to heart by all who view it.
My daughter is now 31 years old, multi-developmentally disabled, as well as a few physical issues.

When she was not quite two years old, her doctor said to put her in an instution as she would never walk, talk, or function anywhere near normal. Basicly, she would be a vegetable.

She graduated high school and was on the honor roll her last quarter.

She belongs to a self-advocacy panel and represents a five-county area. She is also part of a council she calls a "council of councils".

She has one published book and writes a lot of "fanfics" online.
Pretty good and a long ways from "never......function"!

Yes, it was, still is, and will always be a long, hard road for everyone.

I feel blessed that I have her. She has taught me so much about real life, what is really important and what doesn't matter. The patience and understanding I have learned is beyond what I ever dreamed of having.

See nature through her eyes and you will see as a child, rediscovering the world. Really SEE and WATCH birds, squirrels, deer, even cats and dogs. They are all God's creations and so are our gifts, our special people.
Why doesn't CNN post your segments online? This was fascinating and more people need to see it. Great job
Hello Doctor,
The video of Amanda Baggs, as well as your story on her, has given me insight to the experience and behaviour of my 10 year old daughter, Kyla.

My daughter Kyla has come a long way communicating verbally and interacting with others. It is only now that I appreciate the Herculean effort made on her part to understand our world.

Thank you for introducing me to Amanda Baggs. Thank you for being a real hero of our age.
Sometimes it isn't possible to say for sure that someone has autism; my GP thinks I have Asperger's, but while on psychiatrist thought I did have it, a couple of others wouldn't commit. I do have strong schizoid characteristics and like being alone, but I also dislike eye contact which is often very painful. Some people have soft eyes that are easy to look at but others have eyes like lasers that bore into one like hot irons. I was top of my class at school until a few months before taking my exams when my ability to concentrate suddenly disappeared. The only way to live with this sort of condition - whatever it is - is to accept it and go with it rather than fight it.
Dr. Gupta,
I am a home health pediatric nurse caring for children with a number of medical disabilities. I care for 1 child now 12 years old who has Cornelia de Lange Syndrome. he is also autistic, which seems to be common with this syndrome. for many years now parents and some doctors have been suggesting that the mercury in vaccines have been the cause of autism.
mercury has been around for centuries so I have never believed this was an issue. it is almost impossible for a nurse to question most physicians and have any chance of credibility. my question is and has been "is autism the outward symptom of CDL syndrome or other little known syndromes that are within the DNA at birth and inherited.
as our population grows there is a greater chance of increased DNA cliches, if you will, being recognized. I would like to hear you opinion on this.
Thank you so very much Dr. Gupta! I have seen many shows the last couple of weeks that portrayed Autism and I was left very empty and very angry! Your show was excellent! Amanda ia an inspiration to all that watched this, no doubt! You have given hope to families that have children with ANY form of Autism! Hopefully your show will make people rethink before they judge others that are different.
I have 11 children and my youngest is 3 and has been diagnosed with severe, yet high functioning Autism. You would not know to see him that he has Autism...most of the time. The only clue would be the lack of speech.
This has been very hard as he DID have speech until apporx. 19 months of age. That was when he lost everything!
Please continue to follow up on Autism....causes, treatments, financial burden, etc.. We are using a treatment that has showed tremendous results! We are however following this treament on our own as we have NO medical insurance. It is truly taking everything we have to do this! We are having to fight for a medical card for our son and so that he can get therapy and other desperately needed tests! We would move to another state that is more lenient but we relocated here sure to Hurricane Katrina and within 4 months to relocating, we got our Autism diagnosis. There is no mony left to move again.
Sorry to have gotten off track! This post was to commend you for a great show!!!
God bless you and CNN for reaching so many and giving more hope to others that might not have had it otherwise!!!
God bless you!!!
Sincerely,
Tammy McNair
This was a beautiful story.I especially wonder about the deficits of "normals" she finds most annoying and also the most humorous.maybe i'll just ask her.
Thank you Amanda and Dr. Gupta for telling this story. I am an Occupational Therapist working at a small school in LA. The majority of our students have autism and are non-verbal. We focus on communication through typing and using a simple letter board. All of our students are very bright. For many it is their first chance to communicate with anyone. Hopefully stories like Amanda's and other adults with autism will convince teachers, therapists and the funding sources, that people with autism are intelligent, not people who need fixing or changing, they are people that just need to be understood and listened to. It is a complete myth that 75% of autist people are retarded. Like Amada said, "If you don't know how to respond to me, I'm broken. If I don't respond to you, I am broken". It is our narrow mindedness that is creating that myth.
I learned something new watching the interview on CNN. Amanda is communicating with her whole environment, so she is easily distracted by her environment. I never heard it put like that and it makes sense. I also think Amanda's website is a great way to increase awareness.
I hope I hear and see more about Amanda Baggs in the near future.
As the mother of a 16yr old daughter with Autism she is considered "high functioning" a story like this makes me wonder just what she is might be capable of given the technology that is out there. Fascinating story!
I'm struck by two comments in the main article: "...recent science points towards a genetic component..." and "...she says many non-verbal people with autism have the ability to communicate with one another through autistic body cues." Is it possible autism is not a disorder as much as a legacy of how humans (and animals?) communicated before Homo sapiens invented speech?
I have a 9 year old son with Smith Lemli Opitz Syndrome, which has recently been proven to be associated with Autism. My son cannot speak or sign, but he definitely manages to communicate the majority of his needs and wants (if he's hungry enough, he will actually go to the fridge and throw food until someone notices!) He has several of the traits that can be associated with autism, in addition to mental retardation. What struck me about Amanda's video was her description of how she is interacting with the world. Sometimes, we wonder what is going through Chase's mind because what he does seems so strange. His brother and sister and very musical (drums and guitar) and he loves when they practice. He chose drumsticks as his method of exploration for almost a year...carrying them everywhere and tapping or banging on anything that caught his attention. Maybe now I understand more about how he explores the world...he must use every sense to fully understand and grasp the object that caught his attention. I also am moved to re-assess his ability to use an augmentive communication device (we failed miserably the first time because pushing any button was too much fun and he never caught on to the button being associated with a particular item or event). Thank you, Amanda and Dr. Gupta for helping me appreciate my little man even more!
I have to say, after reading this I'm quite amused at the number of people who have close contact with autistics that still consider it a disease, and that these people require treatment.
I have had the good fortune of running across an autistic who has become one of my dearest friends, and offered me an apparently rare insight into his mind, and that of his father, who is also autistic. This man grew up understanding who he was and what that entailed, and has a very in depth understanding of all that autism entails.
I admit, not all of this information was transfered to me, being non autistic, how could I possibly truly understand. I noted in this story, that Sanjay seems to understand at least, that what he knows and what she experiences aren't the same, but I was disappointed to read the article that was linked to this one. (said article is http://www.cnn.com/2007/HEALTH/02/21/autism.amanda/index.html)
While there are some idividuals that are more towards one end of the Autism spectrum, there are those that hide behind it and use it as a justification for poor behavior choices. The article of Amanda on CNN said that she did speak on a limited basis and is no longer verbal. I want to know why this is. I am a special education teacher and work with students on the spectrum. I am often told that they are wired different, which I truely believe they are. It is unfortunate that the diagnosis is so difficult because each child is so unique. Many students are mis-labeled/mis-identified and are serviced with students that have emotional/behavioral problems and the students on the autistic spectrum end up learning bad behaviors. As they age, they continue with the poor behavior choices. I see it everyday.
Being a highly verbal individual; it is extremely difficult for me to comprehend Amanda's view of the world.
However, it is greatly responsive to the environment, and seemingly opposes "behavioral modification". Instead, it would appear that Amanda modifies the environment to meet her "world".

Further, Amanda seems to substitute the senses of smell and physical texture for the visual, not necessarily audio. There is to me a likeness of sorts with the history of Helen Keller;however Amanda is apparently her own teacher, and she can see and hear.

God bless you, Amanda. You are a remarkable woman.

Nancy Joyce Jancourtz.
It does ring in a bit of guilt at not trying harder to understand and know different people.

Our world, this world, defined by rules and regulations about how, when and where we should act is very small when you consider what she is saying.

I've always thought a little bit differently, a little more sensitively than most of my friends and was always callled "strange" and "weird". I feel, I am in all aspects, a normal "human being" because I don't look or act too much differently than the norm and most people accept me. But if you were to think like me, with my visual sense of humor, you might find me vastly alien to your process. I know, I've had close friends that were heavily involved in math. I never understood them but we connected because some of them thought visually.

As I age I realize how I have sought out people that have similar thought processes because they "get me". I don't have to try to explain my humor or my thoughts to them because we share the same visual sense of humor. We build scenes in our minds and add to them, almost like a movie.

What occurs when people with our type of thought process stumble upon word or number people is amazing and frustrating at the same time.

So in essence, I kind of understand what she is talking about and I will try to experience more of my surroundings the way she does just to change my point of reference and learn. I am thankful for the ability to hear what she has to say!
The more I learn about how autistic people interact with their world and communicate, the more I am convinced that we are dealing with a form of human evolution. I wonder what incredible innovations by autistic people would be possible if they had more of an opportunity to interact with the world on their own terms.
I read just this week that when folks with autism look at faces, especially eyes, they show brain activity identical to seeing other sorts of very real dangers and threats. I believe this was a study referenced in Scientific Mind. If that bears out, it would make sense to stop pushing the eye contact training many clinicians (me included) have used as part of social skills training programs for people with AS.
Thanks for the story that reminds us there is more to a person than their differences.
I am currently a habilitator for 3 children who are all on the Autism Spectrum. I think it was very interesting to hear Amanda's story, and I have also watched her videos on YouTube, but she does not encompass every aspect of all autistic people. Yes people diagnosed with autism do usually have some similar issues, such as little or no eye contact and problems communicating but that does not mean that once you understand Amanda, that you understand every person with autism. The bad side of this blog is that everyone that knows nothing about autism will now assume that they can understand everyone they meet on the spectrum. This is absolutely not true! Every child I have worked with (a total of 5) are all different in many ways. The majority of people assume certain things about everyone with autism, and by posting this blog and only having the perspective of one autistic person you are doing exactly that. Before putting out this kind of information, you should have done much more research, because if you had you would know that you do not understand autism from speaking to just this woman. I am sure everyone who is affected by this disorder would appreciate if you and others like you providing the public with information on autism, would make the effort to get as much useful information as possible. There is already enough misunderstanding of people with autism, we don't need anymore.
Anyone who has even hear of the things that Temple Grandin has done, not only for people with Autisum but also for the Veterinary field, must see that Autisum doesn't make someone stupid. The Veterinary field is very difficult to get into and succesed in, even for "normal" people. I personaly have a great respect for the individuals with autism who manage to live in a society not built with them in mind. And I believe that all us "normal" people, could learn a lot from their different perspective on the world. For anyone who's interested Temple Grandin has written a number of books that, I feel, really help the rest of society understand a little better.
we are parents of a 24 yr old severly autistic daughter.we live in rural n.w. ohio and the schooling here was horrible for our daughter joy as well as the local MRDD [mentally retarded developmentally delayed] board.so little and few knowledgable professionals involved with autism.including our own local police here.autism phobia is real.we have shocking real true life stories right here in ohio that you wouldnt believe till you talked to local lawyers and looked at public court records and saw for your self.we were forced to move out of town by a local policeman who sued us and took us to court over our autistic daughter and right up to the date of court before he settled out of court for $500.00 added to out lawyers fee of 700.plus we had to move.out of town and into the county.a policeman who is scared of autistic people and a small town good ol boy system cost us $1200. and we had to move out of town.yes here in america.n.w.ohio.
let me congratulate cnn for taking this subject up.this gives me alot of hope for my daughter joy and is really fascinating to be able to hear an autistic persons point of view.what i consider true autism....non verble and seemingly in thier own world and what appears to be out of touch and unreachable,but this segmant has proven otherwise.A BIG HOOYA!!! TO YOU ALL AT CNN FOR AN EYE OPENER EVAN FOR A PARENT OF A SEVERLY DISABLED AUTISTIC ADULT CHILD.I THINK I HAVE HEARD MORE ON T.V. IN THE LAST 4 MTHS ABOUT AUTISM THAN THE LAST 22 YRS WE HAVE HAD TO DEAL WITH IT.ITS SUCH AN ENCOURAGING SIGN TO SEE IT BEING INVESTIGATED AND REPORTED ON.WE MISSED ANDERSON COOPERS SHOW BUT WE WILL TRY AND SEE IT SOME OTHER WAY.WE HAVE TWO SONS ALSO.ONE RECENTLY GRADUATED FROM OSU.AGAIN,WHAT A FASCINATING LOOK INTO THE MIND OF AN AUTISTIC PERSON YOU HAVE MADE MORE WIDLY KNOWN NOW...THANKS AND GOD BLESS.KEEP UP THE GOOD WORK.
Some random thoughts on Autism, in no particular order....

I am still not convinced that autism, in all it's flavors, is correctly labeled a "disorder". It seems to me to be more of an evolutionary process in different ways of communicating. I think better progress in understanding it might be made if that thought were kept in mind, rather than the thought of making it go away.

My child is labeled high functioning, with ADHD and sensory integration disorder. This means she could not focus on her surroundings (yes, she took it all in, she could spot the ant crawling on the carpet 3 meters away upon entering a room) but she could not Focus long enough to learn her colors. Through therapy and medication, she has gone from getting kicked out of pre-school to being on the honor roll of her grade (2nd grade).

The person who is speaking on Risperidone - yeah, it worked wonders on the irritability and frustration/anger responses, and also helped greatly in the ability to move on...(we finally are not still talking about Santa in July, the same as if it were Dec 26th).

I realize that medication therapy will not work for everyone, and I would not reccomend even trying it without therapy as well. But look at it this way - one can always stop giving the medication if it does not work, but are you really being fair to the child to deny them the opportunity?

And here's a poser for you - how do you tell a child they 'are autistic'? Eventually, she will ask what that magnet on the car is for, or why I said that to someone. Eventually, she will need to understand what it is and how it makes her different than a lot of other people, and I will have to convince her that different doesn't mean bad, when today's society would teach us otherwise.

My friend has a son with Aspergers, and she tries to hide it. My daughter made amazing leaps in school with the specials they have her using - an FM system for when she can't filter out the teachers voice from the other sounds, and a full time assistant to help her work through things that scare her or upset her sensory issues.(just two of her specials, among other things) My friend doesn't want attention drawn to her son's problem, and will not request this from the school, because it would make him stand out as different. I have found my daughter's classmates to be very helpful, and caring, of my daughter, and when they had a substitute one day, they stood up for my daughter when the announcements were too loud and the teacher didn't know to warn her to cover her ears (she almost got in trouble for her meltdown). First graders did this. (you have to cover her ears so it doesn't hurt her! they told the teacher. and the children brought her back from the meltdown) I have found that, rather then demeaning a child for being different, they want to take care of her and protect her. She has far less meltdowns now at school because everyone makes her feel safe there. It saddens me to see my friend denying her son so much in the name of fitting in.

I hope that someday, the focus will not be on 'curing' autism, but integrating it. There is an amazing person behind every pair of autistic eyes, if only we knew how to communicate with them, if only we understood how they communicate. If you think of it as a disease, then you will pity them, you will automatically think that it is something that needs curing. You won't value the differences. Instead, perhaps autism is the next evolution of communication. Those of us who don't try to understand it are going to be left behind. My daughter liked to taste the wind, as a baby. I always wondered what it was telling her that I was missing out on.
you have a great article on this subject, tyvm, i am a mother of two autistic daughters, i have my 11 yrs. old, who is autistic then my 10 yrs old with adhd, then i have an autistic, 8 yrs. old, so i know that some days i wonder where my kids are going to be by the time they are of age, i will keep on praying for my children and the others, this problem is growing rapidly. when my first child was born in 1995 it was 1 in every 10,000 now in 2007 it is 1 in every 150, so sad, please god look after these children they need u, in jesus name amen.
This comment is for Katherine from Woodland Hills. I can see so much of my nephew in your child! My nephew was diagnosed with autism almost 2 years ago now. He is 4 years old. He felt no pain and would bite himself out of frustration constantly, leaving bruises all over his arms. My sister in law put him on the GFCFdiet - gluten free casein free diet. It was very hard at first, because he was so unwilling to eat new foods. He ate white buns, baby cookies, french fries, and drank milk. That was his diet. After taking him off of all dairy and gluten (bread) He felt pain! Some children have allergies to these foods which act like morphine once digested so they don't feel pain. He would do anything to try to get to a bag of buns or milk - it was like he was a drug addict. After a few weeks of him being gluten and casein free, he was a different child. It sounds sad, but when he fell down or bumped into the table he cried! We were so overjoyed from him feeling pain that WE cried. He can focus a lot better now, he is even starting to say a few words. He will look you in the eye and he gives kisses now. He is starting to interact with other children. They have him in pre-school with an aid, and he also goes to therapy. They put him on the diet before preschool or therapy.

He has improved so much over the past 1 1/2 years. We are so proud of him. We all know if he gets hold of buns, candy, or dairy, he is "out of it" He will stare into space, laugh at nothing (that we could see), flap his hands, run on his tippy toes in circles - all stim behaviour. He doesn't stim when he is on the diet. He also shows interest in trying new foods - which is a miracle. At first they would start out by putting it on a plate beside his plate. Then put the food on his plate, they would just ask him to touch it, and so on. He eventually would lick it, then put it in his mouth, then chew, etc. When they were visiting one day, I had a bowl of cherries on the table. He took one and popped it into his mouth -while I panicked - he chewed. It had a pit in it so I took a pit out of another one and gave it to him. He wouldn't eat it. He would only eat the ones with the pits - chew half and spit the rest with the pit out. I didn't care! I was happy to see him eat half cherries! He also loves grapes now.

So, Katherine from Woodland, I just encourage you to visit the gfcfdiet.com website. There are a lot of testimonials on there that will shock you. You will most likely see your own child in those other children. They also have a great support network set up. These kids are beautiful, smart people. They deserve a chance to have a little fog lifted - even if it means extra effort on the family members. I buy separate gluten free bread, casein free butter, and other gluten/casein treats to have on hand when they come to visit. I am honored to do this for him. He is a great little guy, and I am very excited for his future.

Thankyou for taking the time to read this.

Posted by Shelly from Canada
Dr. Gupta, please revise your list of quick facts you give about autism. One of your bullet points is just plain wrong -- the claim that 75% of folks on the autism spectrum are intellectually impaired. This is old "conventional wisdom" that is giving way to better science and better adaptive communication technology and methodology, as hinted at by Dr. Eric Hollander's comments on this same program.
Perpetuating the myth that 75% of folks on the spectrum are intellectually impaired does us all a disservice, because it results in inappropriate interventions and educational placements, and inadequate accommodations.
I have an autistic son who can not speak, use sign language or Picture Exchange Program. I am so happy that you covered the story of the remarkable woman. My son is also hyperlexic. Although he is only 3 he uses block letters and tile letter to spell words at an 8th grade level. He doesn't understand the meaning of the words yet, but he has the most remarkable memory. I hope you continue with the reports on people with autism. It really helps the world understand, and it helps the parents and loved ones of those who are autistic realize there is hope for the person inside the autistic mind. Once day we might be able to communicate with them and understand our own children even more.

THANKS!
Unlike my 35 year-old son Ben with "low functioning autism," the developmental history of Amanda, as disclosed in her own writings, is very complex. Although my son was almost independent in typing when he started 14 years ago at the Boston Higashi School, I believe he later chose to use Facilitated Communication ("FC") so he could express his thoughts much faster and be able to think more "deeply."

My son has always been treated with respect, despite his "low functioning autism" evident since he was a toddler, within our religious community, but over 12 years ago he chose (through the use of FC) to live in the very large religious community in Israel, where he is treated with great respect.

When applying for a U.S. passport, my son typed "All persons with autism are smarter than all normal persons." This has been my own experience all these years. While my own son has always been completely nonverbal, typing has allowed him to show how smart he really is.
What is autism? My son is autistic, possibly Aspergers, but how can I describe him to you? He's seven and brilliant, his teachers agree, though the more disciplined and organized teachers have a harder time coping with his differences - he doesn't fit any molds. He has some mild behavioral issues. Often it's hard to tell what is him and what is the Autism - what do we hold him accountable for? We know and love him better than anyone in the world, and yet we so often find ourselves grasping for clues to intuit his state of mind and how he perceives his world. He loves us... but expresses it very differently than our normally developing son. We know better than to expect hugs, which is hard when we are the ones who really need it... and yet in some way, if done the right way, which isn't always the same way as the day before, we know he needs and wants hugs as much as any child. He has moods like everyone else, and has a tough time controlling his feelings. He has relatively good eye contact, but it's not comfortable for him to maintain it for long periods. He smiles and laughs and cries and yells like every other 7 year old. He likes numbers and letters and wristwatches and measuring tapes. He loves the ocean. He is fascinated by outer space. He likes "free play", but only in the past year or two has he really figured out how to play. Before he learned, he would just spin things over and over and over. Sometimes the "thing" he spun was himself. Gluten and Casein make him "high", so he is on a special diet, and also took special vitamin and mineral supplements for years. Health insurance didn't cover his needs, which were significant already by the time he was 3 years old. Luckily a special program at my company did... to the tune of $27,000. We're very lucky... for some kids, $27K won'te even cover 6 months worth of the specialized therapy they need. My son needed speech/play therapy as well as occupational therapy. We had to fight our way through the medical system to get those treatments for him. Once he got them, he soared. Not every child does. I realize this comment rambles, but I don't know any other way to describe my son - he's unpredictable, and different from every other autistic child described in this blog, though some similarities exist here and there. His classmates and school have adapted to him to a large degree so we are lucky again, for now. I am the parent of an autistic child, but I don't think I can tell you what autism is.
Amanda, thank you for sharing your story and trying to explain your condition to us. It truly was eye-opening. Please continue to make videos teaching about your daily life.

Sincerely, Erik.
I know from what Amanda has said at her blog (http://ballastexistenz.autistics.org) that all this publicity makes her uncomfortable. But I'm still glad to see this story here because Amanda has many important messages to share with the world. One, that just because you can't talk doesn't mean you have nothing to say. And, two, all people have value.

A few of her videos and other blog posts that I've enjoyed viewing are:

http://ballastexistenz.autistics.org/?p=220
Video on why "retard" should not be considered an insult -- that the real
insult behind the label "retard" is not being considered to have a
cognitive disability but the assumption that a person with a cognitive
disability is necessarily a non-person.

http://ballastexistenz.autistics.org/?p=223
"Being an Unperson" videotape. On what it's like to have others
dehumanize you, perceive you as an "unperson" etc.

http://ballastexistenz.autistics.org/?p=38
Book reviews for books on autism (or by autistic authors) that Amanda likes

http://ballastexistenz.autistics.org/?p=53
Tongue-in-cheek questions for non-autistics (all of which are reversals of
the kind of questions nuerotypicals commonly ask autistics), with
extensive explanation for each one. Humorous but also enlightening for non-autistics who are still learning about autism from the autistic's perspective.

http://ballastexistenz.autistics.org/?p=124
On why some autistics seem to regress in adolesence and how the learning path of autistics isn't the same as the learning path of non-autistics. Includes the importance of contact with other autistics.

http://ballastexistenz.autistics.org/?page_id=143
List of authors who are both autistic and non-verbal (use typing, or facilitated communication, etc etc to communicate instead of speech)

http://ballastexistenz.autistics.org/?p=235
links to pages with links to more disability blogs


http://ballastexistenz.autistics.org/?p=287
Video in the language of autistic people, on how even seemingly "purposeless" motion has purpose and significance and on how autistic people are far more aware of the world than others think, even if not necessarily in the way others think they should be. A must-see. I believe this is probably the video that caught the attention of CNN.

http://ballastexistenz.autistics.org/?p=240
An interview with another autistic woman (Laura Tisoncik), who is commonly viewed as "high functioning." This video focuses on why labels such as "low functioning" and "high functioning" have very little meaning for most autistics and can even do more harm than good.
Hello Dr,Gupta ,I am Patricia, a clinical psychologist,ph.d. from (Valencia) Spain.I've worked with autistic children for the last ten years.In my opinion,autisitic spectrum patients can have very good visual habilities ,sometimes exceptional skills,but generally speaking, they lack of language and social skills and their reasoning level is lower than average.However,many of them are very sensitive to social rejection and enjoy being close to people although they seem not to want it.My email is borreguero2@yahoo.es,greetings
Dr. Gupta- I watched the interview with Amanda and thought this might be of interest to you.I am a school board consultant (Hamilton Catholic, Ontario Canada) for students with ASD.This past week one of our local doctors Peter Szatmari along with a team of international researchers announced they believe they have found the gene responsible for ASD.It is very exciting for us as Dr. Szatmari works with many of the families and children I service. Although it won't impact directly on my students it is critical information for siblings and parents for future decisions. I have watched all your ASD specials and each has reinforced the puzzle of autism and the challenges it presents for children ,parents and educators.
My 13 year old son Christopher is autistic with limited vocabulary. He is one of the biggest joys in my life. He loves country music and could give any music lover a run for their money. Chris had a report card in grade 7 that every parent would envy ... doesn't smoke ... doesn't drink ... doesn't do drugs ... hugs me and tells me he loves me every day ... are you getting my message?
Amanda has a gift from the universe. Without speech, we, at first thought, might think we would be cavemen. But as a person on a spiritural journey, I know how silence is bliss, I understand now that most of the spoken language is garbage, gossip,words to deceive. Being able to be still, silent, is the beginning of being aware, being enlightened. Maybe autism has more to teach us--not in terms of modern-day education, but in terms of spiritual growth and awareness of our universe.
I work with children and adults with Autism, and let me say, this was a nice story to read. Knowing that this woman is aware of her situation, and that she can actually "talk" about it, explain it to others, is amazing.

However, I think that the article could have provided a bit more information about HOW Amanda learned to communicate, how long it took her to learn, and what her communication skills were like when she was much younger. I feel that the article could be misleading to some who are not experienced with individuals with Autism - because let me say, it is not easy for such individuals to learn not only how to communicate, but to creatively communicate-- for example, many individuals with Autism are taught what to say in response to a stimulus. They are even taught scripted conversations.

It seems as if Amanda can just so easily communicate her thoughts, and sadly, not all individuals with Autism have the ability to do that. I wish the article compared Amanda to more severely Autistic individuals.
I have a nephew that is 14 years old with autism. He is totally non verval. He too is very intelligent but can not communicate it. The school system does not help with these types of children to make matters worse. I am glad you had this show... I told my sister that I would like for her son to have the opportunity to communicate with a device like Amanda uses. I know with the right training that it would change his life. Garrett is thought of the exact way Amanda explains.... it is so very sad. Thank you again for sharing this with the world.
Thank you for bringing up the issue of adults that have autism. I am an occupational therapist that works with children that are on the autism spectrum and I have often wondered what the future holds for them. As other people have stated, EVERY person who has autism is an individual and should be treated as such, just as no two snowflakes are alike. The insurance industry definitely needs to change to include coverage for these families, as people that have autism generally require a great deal of support (i.e. Amanda receiving assistive technology to help her communicate). Thank you for bringing attention to adults that have autism. It helps me in my practice with helping families that have children with autism, in preparing them for the future.
Mariann
After watching the special on Autism with Amanda and Dr. Gupta, I was was very surprised and shocked at how Amanda communicates with her computer. I've always believed that people with Autism were possibly smart, but could not express it. This is so exciting to see that they could possibly communicate like Amanda does on the computer. She is amazing and so intelligent that she would put the average person to shame. Her typing ability is amazing and it was such an eye opener for me to see this, that I believe Dr. Gupta has hit on something with this special report. This could open a whole new world for autistic people. Great job Amanda and Dr. Gupta!
My eldest child who is 13 has a high funtioning form of autism. A lot needs to be done to educate the public about autism. My daughter is is so much more that her autistic characteristics. It is a part of who shee but it doesn't define her as an individual. I think until now when one hears "autism" one might as well hear "alien". It is a different way of interacting with the world than is typical (who's typical?) but one that can have a postive impact, if we learn how to learn from and with them, and avoid dismissal of their gifts. My youngest daughter has Down syndrome and I'm here to say she has a gift for friendship, community and intimacy from which we can learn and benefit. It's partly a question of being open to differences.

There is a dearth of information on how to help teenagers with autism. We are getting good at diagnosing babies and early intervention, but it is a lifelong challenge.

Thanks for your story!!

Teresa Armstrong
i have a 8 yr old son with autism he doesnt talk very much at all he just mumbles some but he can say mom really well and he likes to look at books alot and he likes advertisements for medicines and he seems to know what he wants he will get us by the hand and try and lead us to what he wants he is my only child and this is very hard for me the story about amanda is very encouraging because i often wonder if my son will be able to take care of hisself when he is grown. i am glad that there are finally information and more attention to people with autism because it has really been a struggle for me just trying to understand why my son has autism and what causes autism hopefully someday there will be answers
Many years ago I worked with an autistic young woman. She too was diagnosed as low functioning, very limited repetative speech and like to rub and smell the paper of magazines. We called it self-stim and vigorously discouraged it. Then we began using facilitated communication. What she "typed" to me was humbling. All these years we assumed that what she said "yesyes yes yes yes " was what she wanted. She told us her verbal had no connection to her actual desire. She said she couldn't "help" what was coming out. I found an intelligent, aticulate women behind her misfiring perseverative "low functioning" exterior. It was frightening to realize how many people with austism we are misreading.
Sanjay, thank you and CNN for drawing attention to the autism crisis, both through Amanda's story and other stories you have done. I am the mom of a 12 year old young lady with autism, and stories like this which educate the general public really do make our everyday lives easier. People who meet our children and, through media exposure, are immediately clued in to the nature of their disability can be very warm and helpful, while people who are ignorant think our non-verbal children are being rude or obnoxious for not responding to their greetings.

While our family is active with Autism Speaks and its predecessor organizations, given the complexity of the condition I think a "cure" is a long time coming. Our opportunity is to make strides in adapting our society so that our children can have the most productive, happy and secure lives possible, and media efforts like yours really help with this. Thank you.
I have a 30 year autistic son named Devon who for years was thought to be mildly retarded. He received speech therapy when he was younger but becomes non-communitive at times. He now uses a Neo, a facilitated learning device without speech capabilities to communicate with other people. He has opened up a whole new world to his support workers and his family with this device. We are all amazed at his at his knowledge of grammar, spelling and his wonderful wit. Devon was assessed by Dr. Brodie, a leading expert in adult autisim in Canada last fall. He recommended that Devon continue his education online as this was the medium that he excels in. As his mother, I always knew he was intelligent,creative and had a wonderful sense of humor. Since he's been using his Neo and the computer to communicate he has revealed to us his thoughts, feelings, and humor on everything. He is educating us and has revealed the world of autism to all of us. We always referred to Devon as "our little engineer" because he is fascinated by building construction and reproduces these structures in Lego. Devon is also "the weatherman" because he follows the weather diligently and everytime there is a hurricane he creates his own maps of the storm using NASA maps.

Devon has behavioral mannerisms similar to Amanda Baggs that when people first meet him they think he is retarded but he's not. He has some behaviors that definately are considered excentric, obsessive and
repetitive that Amanda has. Playing with water, constant movement of his hands, and carrying around his creation of the earth are an example of this behavior.

Thank you for bringing Autisim awareness to the public. I am a member of the Board of Directors for Autism Yukon and early diagnosism, ABA therapy, and the public education of autism is so important. I recenly had the pleasure of announcing the first Adult Day Program for Autistic Adults opening in Whitehorse on April 1st. We are all very excited about this program because our kids have been neglected by governments and the educational system too long.

Thank you, Sanjay
Hello my name is Tonia and I am a 32 year old married Mother of 3 and one of my children has Autism he is 9 years old. His name is Alexander (Alex). He is also my middle child. It amazes me to find out how many people are out there with Autism, Alex unlike Amanda is High functioning, meaning he can communicate verbally, almost like a regular person. Although he is in a regular classroom he does sometimes have a special needs teacher who works with him.

There are some many different types of Autism it is unreal. He was diagnosed with PDD-NOS Pervasive Developmental Disorder Not Otherwise Specified.... he also had genetics testing he is missing a part of his Y7 Chromosome. It's just a big mystery, but these very unique individuals are a true joy to be around. Alex likes to play video games and is rather "too good" at it. He also hummes alot flaps his hands and does not like loud noises, he has to have a "routine" I always have to explain to him what we are doing and when and if any changes arise I have to let him know, or he gets upset and cries. It took us until about last year to fully potty train him, but he does well with that now as well as bathing on his own. I knew from birth that this little boy would be special and for most people they can't tell, until you have spent some time with him. My goal is to eventually not work out of the home but to be more active and involved with Autism I feel truly blessed that the Lord has given him to me. if you would like to email me you may do so at tharp_wv@yahoo.com and thank you for your story on Amanda.

Sincerely,


Mrs. Tonia Harper
Thank you for televising this segment. Those individuals with autism - who are considered "low functioning" are certainly underestimated in their contributions and abilities. The terms - low and high functioning - just serve to further separate and discriminate people with autism. Most of the people with autism are intelligent and caring people - and they just communicate in different ways. Help stop the inaccurate 'labeling' of people on the autism spectrum so that everyone can be respected, included in the community and get the education/services that are available.
I was amazed to meet Amanda through your artical. Like most Americans, I have a family member who has Autism and I know very little about it. Amanda is right; on so many accounts. We have viewed those with Autism as non thinking. If I met her on the street I would never have supposed she would have written the words I heard her voice synthasizer. I would like her to know that I don't see her video as any type of freak show but as an opening of my eyes to her way of communication. It brings about so many questions that we should try to answer about the 1 in 150 other American children who are affected with Autism. Are they all communicating in Amanda's native language and we just don't understand it? Can we learn it? If she is present with another Autistic person does she feel she communicates with them in her native language and they understand it in a way that two people who "speak" do? Do all Autistic people share the same "native" language? She stated that we are failing to learn her language and I wonder if we can. Are we trying?
Once I took a middle aged man who'd been dually diagnosed with SMI/MR to a movie. A huge Micky Mouse was propped up in the lobby. He embraced it and had a conversation, during which he seemed to hear Micky talking back to him.
Late that night, he emerged from his bedroom to tell me that he'd known all along that Micky wasn't real. He was just having a good time.
I got the sense that here was a whole, intact, and fascinating person -in some sense "in on the joke" - who'd been separated from much of humanity because he doesn't express himself like most of us. I had a feeling of humility and awe, a sense that our whole concept of disability is flawed.
Sanjay,

I can't begin to express how exciting it is to learn that a non-verbal autistic really can learn to communicate with the outside world in a way that can be understood by them. For the first time in years, I have revived hope that, just maybe, my adult, low-functioning autistic daughter can learn to communicate her thoughts to me through the computer too. We have a wonderful relationship, my daughter and I. We communicate well; me, of course in sentences and prompts, she in looks, gestures, and some words that express her basic wants. What has been missing and what I have wished for more than anything is to know how she feels about things. Today, for the first time in years, I am hopeful that there is a way for her to share those feelings with me.
@ Trisha Patel

You say that autism can be diagnosed as early as one year, but not all autistic children develop autism by that age. My brother was speaking complete sentences ahead of his peers. One day he developed a bad fever, and by the time he recovered a few days later, wasn't speaking a word. He's 17 now and has had continuous therapy, but still rarely speaks, and I can't remember his last complete sentence.

It's a common misconception in the medical community that all autistic children are born that way, and it is simply not recognized until speech fails to develop, but you shouldn't ignore the anecdotal evidence that some children are born apparently normal and become autistic.
TO, Todd Van Doren Plano, Tx

I am interested in knowing more about
biomedical treatments for autism. Where and how can I find anything about it?
This post has been removed by a blog administrator.
Dr. Gupta, thankyou for the very insightful story about Amanda! I have a son with autism and he has some of the same characteristics as Amanda, but has become very verbal and communicative. I watched Amanda's video and read her words several times in order to get a better insight into how my own son thinks, feels and experiences the world. Thankyou for helping parents like me better understand the inner thoughts of an autistic person.
The work of Amanda Baggs and other autistics who are online and advocating helped me understand the word that someone finally gave me to understand me. I "became" an Aspie at age 40. Now, of course that's a silly thought, i've been like this (shunned, weird, focused, intelligent, clumsy, clueless) since the moment i was born (i can remember). The point: there are thousand of us born in the 50's & 60's who were undiagnosed in the shadow of Bruno Bettelheim, the fraudulent "doctor" with his autism theory of "refrigerator mothers". What parent of an odd but passable child would submit to that kind of shameful diagnosis?
There is no explosion or epidemic, only better diagnosis and manipulation of statistics to make someone a pile of money.
To parents who really want to communicate with their autistic child, make friends with an autistic adult and develop a mentorship relation. If you have a Martian in the family, visit the Martian embassy in your town for some communication and culture advice. Cross-generational and cross cultural dialog within the autism/Asperger communities would do a lot to facilitate REAL understanding and communication for EVERYone. I do presentations in middle schools about being an adult autistic and the kids send me FAN MAIL! That says something about kids needing role models like themselves, so WAY TO GO AMANDA!!!!! There are kids like you out there whose lives you HAVE changed, kids who have new information and ideas because of your willingness so share your art, and all the risks that go along with that.
You're a rock star. :)
What a wonderful story and segment. It was sent to me by a friend who thought I would enjoy it and relate since I have a 13 year old son with Aspergers Syndrome. It was no surprise to me at all to see Amanda and her "stimming" behaviors. Nor to see and hear how brilliant she is behind it all.

Our culture is so full of judgemental people. Could anyone take a look at the Dr. Stephen Hawking and think "He's BRILLIANT!"? Then why would Amanda be any different? When we as a people learn to look deeper, to not pass judgement, to not feel such a need to put a tidy lable on everything and everyone, then people like Amanda will be understood. Sadly, not before. It's us, not her who's broken. Us as a culture and a people.
The story regarding Amanda Baggs is so important to educate individuals not familiar with the communication challenges of Autistic individuals who are on an experiential life journey, along with the rest of society.
This information has enormous implications for the care and optimal welfare of individuals facing these types of experiential phenomena, and to safeguard the living envionment for such persons who may be considered vulnerable, a high tech home, certainly lends a more secure vision for those individuals with additional care issues such as quadrapleigic client's who, as you know, have multiple care needs.
Group homes should have video streaming systems available to observe the interactions of the worker care team in the environment for reasons of optimal case management interventions, medical oversight, staff development issues, and monitoring systems for the purpose of offering the ultimate in systemic collaborative treatment systems.
Just think of how professional therapists will be able to interact with such systems in place, and share their personal cases with their case workers, who will increase their capacity to provide more comprehensive, integrated services.
i am thankful that your are on the CNN team, as your contribution to society is always honest and altruistic, which is what is important for spiritual health, along with a vibrant sense of humor............one of your many admirers, i'm sure........take care
Good article. Your staff has highlighted the man who knows pi and this woman. Now you need to highlight the average folk who work 9 to 5 jobs with little or no help.
A thought for the future, 60 Minutes covered the non-pi of that gentleman, making him a full human with more abilities than reciting "3.14159..." maybe the next time you and your staff cover people with unusual abilities you could mention what else they do.
I read some of the comments and want to add to some already mentioned concerns. Because my son was not a behavioral problem in school and received very good grades he was not diagnosed with Asperger's until he was 16 years old. Although he was in special education for about four years receiving extra physical ed. and speech therapy, and was referred to a psychologist and neurologist no one came up with the diagnosis. My husband and I always knew he was differen, had some odd behavior, and behaved painfully shy not being able to maintain friendships. The school system he attended is one of the top rated public schools in the state. But when we found out what the problem was with him and approached the teachers and administrators about how his condition could have been missed, no one had any answers for us. Most of them didn't know the signs of Asperger's and some didn't even know what it was. Had I seen the movies Rainman and A Beautiful Mind when they first came out (I just recently saw them after his doctor diagnosed him), I would have made a connection with the similar behaviors. Not only are the teachers and administrators not familiar with recognizing the signs in children on the autism spectrum, they are not protecting those children from being bullyed and teased. Every year my husband and I went to the school or called to find out why our child is always being harrassed both verbally and physically abused by other children. Had we known then that he had Asperger's we would have had him home schooled. These children don't need to be mainstreamed in a place where they are being turtured. It's more important that they are happy. My son was a very happy child most of the time. He loved school until about the second grade. He had a very mean cruel teacher in second grade and we tried with no success to have him removed from that class and put into one with a more nurturing teacher. Many people don't realise that bullying to a child with autism is much more serious than neurotypical children. Abuse to a child with AS stays with them and cause irreversible harm. The abuse can cause these children to grow up with other serious psychological problems. My son showed all of the classic signs of Asperger's. I am outraged that no one picked up on his condition all of those years. I'm angry with myself for not being a movie goer and therefore I missed those two movies. Hollywood knows more about these disorders than my pediatrian, neurologist, child study team, teachers, etc.My son had no or little eye contact and there are written reports from the child study team stating that his behavior in school was hurting his relationship with peers. During observation in one class the children were asked to get up and sit on the floor all together. My son remained in his seat with his head down and slumped in his chair refusing to join the others. There were too many signs to mention. Now, at 17 he is academically prepared for university, but lacks the social maturity to go away on his own. His A's in honors and AP classes will buy him entrance into a good college. Our question is...how will make it on his own? Can he? We don't know. He's not prepared. We are left scrammbling around to find resources on our own in a short amount of time to help him. He has learned through his parents and his peers how to look more normal. One example is: he used to walk like rainman did with his hands cupped together on his chest. He walked awkwardly with a stare on his face. I repeatedly asked him to release his arms and let them fall to his side. I joked he was T-Rex (not knowing this was a sign of something serious). He learned,though, after years of walking that way. He saw his peers and how they walked. The school called me to tell me, and seemed annoyed, that my son was walking into the walls in the hallways. I find out now, years later after asking him again, why did you walk into the walls, he answered, "I was following the patterns on the floor". These kids can learn if they are diagnosed early and special attention is given to them. It is a lot of hard work, but they can be helped tremendously. My husband and I were amazed at the report on Amanda. I believe these kids hear and know what is going on around them. They just don't have the ability we neurotypical people have to respond they way we expect them to. My son doesn't talk much to us about what he is thinking, but once he came to me and said he would be willing to speak to a researcher if one wanted to. Whether he meant it or not I don't know. Good show Dr. Gupta.
Dr. Gupta:

Hello - I have watched your segments on CNN many times and I always enjoy the segments you do on autism- I have an autistic boy who is now 15 - I have never in any of your reports and other programs on other shows seen any autisitic teenagers who are like my son - I must say that my son is very very high functioning and can be categorized as asperger's syndrome - He goes to a regular public school and if people do not know him, will not notice that he is autistic. Even his friends from school who have grown up with him unless they are told cannot pick him out as autistic. I just wanted to know when, will your shows and other programs show people like my son who are autistic but are high functioning but they do still have the difficulties of what autism give them - I'm not saying that it is easy, actually it can be more difficult because it is not visible especially dealing with the school and teachers who cannot see a physical or verbal disability but do need to understand his needs and accommodations - thank you again - unfortunately when programs like Amanda from last night and other shows I've seen about autism always portray the more low functioning and disabled autistics, it becomes more difficult for us with high functioning kids to put our kids' needs across because they see nothing -

thank you
Mariam Hedayati - Gaithersburg, MD
Thanks for a very insightful segment. We not all agree with everything, but can't deny that understanding what some of these kids go through is very helpful.

My 12 year old son has autism and can speak some, but it isn't clear. I'd love if he could type and let me know why he smashed the present or hit his mother. He can't. But his school does help with his communication, by using a free web-based application, www.iabida.com where they can post journals, discussions, videos and track behavior. Keep up the good work.
Sanjay, I have worked with and employed an autistic man, named Peter for 25 years. Peter's mother died a number of years ago and his 2 brothers both had some form of autism. Their parents were both brillian. Peter live in his family home with caretakers and comes to work at Stride, Inc. everyday making a valuable contribution to the business. Seeing your story this morning fascinated me. What a challenge this would be to be able to communicate with Peter. I often think, after all these years, I can read what he thinks. But to really know would be marvelous.
Dear Sanjay,

Here, in Wisconsin, we have an alarming increase in the number of chldren diagnosed with autism. I have been a teacher for many years and have taught at all levels including early childhood, high school, special ed and currently speech and language.

A student of mine, in the early 70's, was autistic, but there were almost no resources for him except institutionalization. We now know so much more...and yet, so little.

As with any debate, there are several sides, each of which can only see its own points. If the medical, environmental, pharmaceutical and educational sides could get together, we might have a chance to do some important research.

I work with autistic children everyday and just recently diagnosed another child. The labels of high and low functioning are so misleading and demoralizing. I propose that we use the words highly involved or involved to a lesser degree. Those words don't carry the connotations that come with the old terms and are more reflective of the fact that autism is a spectrum disorder.
Dr. Gupta,

I have a 22-year-old son who is autistic and also completely blind. You rarely hear about this combination of disabilities and it adds to already nearly insurmountable difficulties for parents, teachers and providers. I am lucky, my son can and does speak although he has to be reminded to put things in sentences. He attended the Iowa Braille and Sight Saving school where he was accepted well and taught functional skills. As I've read in many posts, acceptance of this disorder must be learned over time. A person cannot truly learn about autism by reading a book. You have to experience living with it, with things like perseverative obsessive behaviors, for example slamming doors, flushing toilets, and honking a car horn. Thank goodness those phases passed. Now there is yelling, swearing, pinching and biting himself. The latter seems to be the only thing that will end an full-blown behavior episode. However, he is loving, has a sense of humor, enjoys interacting with people and is very well mannered otherwise, using please and thank you, apologizes after behaviors and even after hurting himself. He is currently taking Risperdal, Luvox, Buspar, Namenda and Tegretol. I agree more should be done for adults with autism, and I'm glad to see it is getting more attention. It is sometimes quite frustrating to see fundraising efforts to research other diseases but not my son's.
I watched the feature about Amanda and her triumph over autism. It was very well done.
My husband was watching it with me and pointed out that Amanda's movements are very much like the ones I exhibit when having a seizure, I am epileptic.
I am also unable to talk during some of my seizures, but am aware of things
happening around me, it is horribly frustrating not to be able to respond.

This caused me to wonder whether or not there is any current research into
the relationship between autism and other neurological disorders such as epilepsy?

Bravo for bringing this kind of information and Amanda's story to
the general public.
While I am thoroughly enjoying reading everyone's responses to Dr. Gupta's article, I am also disheartened by some of the terminology. Many parents are hoping for a "cure" someday -- to me that says that they feel their children are in need of curing, that autism, PDD, etc. are not acceptable to them. One parent even called it a disease. Some parents are excited by the strides their children are making in public schools, with therapy and training. Strides toward being more normal. To being more like us. Maybe I received a totally different message from Amanda Biggs' video than these people. What I heard Amanda saying is that people who have been diagnosed on the Autism Spectrum have a different way of communicating than people who have not. Different doesn't mean that it needs to be cured or that it's a disease. Different means different. It means that I don't understand how to listen to them, how to hear them. It means that I have a lot of learning to do if I want to communicate with my 8 year old son who has been diagnosed with PDD/NOS. It means that his brain is working on a different level than mine and he sees things in a way that I could never see. He sees connections between objects, himself, and the world that just don't make sense to me. But it's not a defecit if he's different. It's not a defecit that he can memorize every single little detail about a blue whale's life cycle and describe it to me. I might get annoyed because I can't focus on every single little detail like he can-- but it's not a defecit in him or in me-- it's just who we are. And it's okay that some of his behaviors are annoying-- my older son annoys me too sometimes and he has not been diagnosed with anything. I'm sure, as their mother, that I annoy the heck out of them at times. I guess what I am trying to say is we as a society have a long way to go-- even us parents-- in being accepting of what is different, what we don't understand and what scares us. It is scary that I am not able to communicate with my son on his level-- but it's my job as his mother to try. I am truly grateful that there are so many people out there with the courage to speak their mind, tell us their experiences and help us all understand. So, thank you Dr. Gupta, for posting your blog.
My 16 year old son Carl is a HS sophmore who has maintained a 4.0 average for the last 3 semesters. He scored 100% on his PLAN (pre-ACT)test. He scored only 2 points less than perfect on the WI statewide 8th grade science test. He was reading a college level organic chemistry text book for fun in 8th grade. Carl also has Aspergers with the associated social/behavioral issues but no language deficits. And for the past 3 months his father and I have been locked in a frustrating and progresively escalating battle with his Math-Chemistry teacher and the HS science department over whether or not Carl is too dangerous to have in the classroom. Carl has always planned to take as many physics and chemistry course as he possibly could in HS. On Friday he stated that if everyone was going to be so stupid about chemistry then he did't care what guidance counselor said was needed for college, he wasn't going to take Biology AP or any other science class his senior year. What a loss.

All of the above is to illustrate the range of problems parents face in educating a child who is anywhere on the Spectrum. Verbal/non-verbal, academically/physically challenged or not, getting the services needed to provided your child with skills required to succed and shine in life can be almost overwhelming. Every new teacher, every new school, every new year requires a figurative girding of the loins and gritting of the teeth. I hope we will not have to get nasty and bring up the legal issues the school will face if they do not provide appropriate accomodations.

We want Carl to be able to have a good education because a good education along with training in how to negotiate the social world are necessary for Carl to be able to be financially self-supporting as an adult. However, because life is full of surprises, my husband (a financial planner speicializing in parent with special needs children) is looking at 1) how to structure our finances to provide for Carl as an adult if needed and 2) how to structure our will to ensure that any inheritance Carl received is protected from abuse by others and will not restrict his access to other assistance.

Having a child on the Autism Spectrum is a blessing and a curse. To see Carl's face when he received a solicitation letter from CalTech was a joy beyond belief. To see him in tears because the other kids at school seem to be afraid of him and talking to girls seems to be an unsolvable mystery is heartbreaking. Our life with Carl has been difficult, but I will miss him dreadfully when I have to let him go and be an adult. I guess that is the most normal part of parenting that I get with Carl.
This was an amazing piece of journalism. Out of the hundreds of television stories I have seen, this was the best. I realized as I watched it for the tenth time (TIVO!), that Dr Gupta was the only journalist who could pull this off. He is so disarming and so smart at the same time. I felt like Alice in wonderland looking through the glass. Thank you Sanjay!
My son was diagnosed with autism a few years ago at the age of 4, although we sort of knew from age 3 that something was going on. From a much younger age we knew something was going on with his bowels and immune system too - I mentioned this to our GP long before we noticed anything was amiss developmentally. Anyway, we put him in speech therapy but it did not seem to help very much. I noticed he reacted to certain foods, and pulled gluten, dairy, soy, corn and a couple of other triggers out of his diet, and within a few weeks he had made a leap developmentally, and seemed much calmer and happier. We have kept up the biomed as well as doing speech therapy, and lately adding in yoga and some drama therapy along with playdates chaperoned by someone who can suggest strategies to him when he gets stuck. His level of functioning has been getting better and better, in line with his health - his nutritional profile has improved a lot and his weight and skin colour are healthier, plus he throws off the viruses much more quickly. His IQ has shot up from the lowest end of normal to the low end of superior, which is just because his communication skills have improved, but still, fantastic. He is in a mainstream private selective school and is doing really well with part time support (he gets a TA for two hours a day) and has lots of friends, and let me make it clear he is still autistic, just a lot healthier and on the ball. My goal is to give my little boy with autism the tools to be happy and independent in the world after I am gone. I love his sweet nature and his intellectual interest in cool stuff. I know adolescence will be togh and bullying will have to be dealt with aggressively. I am really pleased with how far he has come and I admire my little kid. I have had to be a much better and resourceful parent than I ever imagined, and I make a lot of mistakes, but we keep moving forward together.
What an eye-opening interview CNN televised! I am an occupational therapist who has worked with children on the spectrum for more than 20 years, and have always wondered what was going on inside those little heads... I knew it was much more than most of us suspected, but Amanda is a great reminder to us that we need to give more thought regarding approaches to "curing" these children. In fact, it may very well be that it is society and the educational system that needs remedying. Thanks again for a window into the world of autism. I hope you will continue to follow Amanda's story.
Amanda's story stimulates concerns. When did she begin showing signs of autism and when did she lose speech?
I am a 65 year old father of 4. Son #1, now age 30, is fully normal and highly successful by all measures. Son #2 was diagnosed with processing delays at age 5, overcame most of those challenges, graduated Cum Laude from USC and is now in Law school. In his teen years he struggled with drugs and depression. He had symptoms of bi-polarity, but has never been diagnosed with the disease per se. Son #3 was adopted at age 13 when I married his mother, is now 21 and has no problems. My daughter, now 5, was adopted at age 5 months and born 9 weeks prematurely. She is tall for her age, very active and coordinated and very intelligent; but she has an unpredictable and strong temper -- mainly focused on her parents, with little or no acting out at school, where she is quite quiet. At times, when angry, she limits her speech or covers her ears. Could unprovoked anger, assertive silence and ear-covering be signs of possible autism or other issues (B's syndrome)? How or should we have her screended?
My 6yr old son has high-functioning autism. He can make eye contact but must work very hard at it. He is very intelligent, but overly focused with certain things to the exclusion of all else. He is not really interested in others feelings, unless it impacts him. He learns differently than others making school more of a challenge for teachers able to teach him, he associates best with pictures. He does not understand the words unless he has a picture to reference in his mind. He is not overly touchy/feely with his emotions, has a very high pain tolerance, but does get his feeling hurt often because he does not understand things as easily as other kids. He is very unique as are all kids with autism, as no one has the same "symptons" for lack of a better word, making diagnosis & treatment more difficult.
As a former autism therapist using the discreet trial/ABA method, I am aghast at the assumptions that I once had about autism as well as how I hoped to "teach" my students. Seeing Amanda made me realize that much of my "teaching" may have been for naught; my students may have really had more of a consciousness than I ever imagined. Repetitive trials and controlling their reinforcers did nothing but attempt to force a person with a different worldview to see life in my - OUR - eyes. There has to be a better way to help these kids.
I did not like her youtube video. I have an ASD daughter and she is nothing like Amanda and exhibits none of Amanda's "weird" behaviors. She is calm, sweet, happy, albeit with moderate language issues, reduced eye contact (but she'll give you more as she gets to know you), and developmental motor delays. It is showcases like Amanda's that gives people the wrong idea that all ASDs must be like her. It makes people assume my daughter must be like Amanda before giving her a chance to prove them wrong. Sanjay, do a piece on the bewildering differences between people who are on the spectrum. Show how exasperating it is to see that Amanda and my daughter can have the same diagnosis, yet are nothing alike.
Every article about autism helps our ever-growing autism community. My son is now 20, a high-functioning autistic person who graduated from high school with a regular diploma + a certificate of initial mastery. He is having great difficulty finding a job and spends his days reading about evergreen trees, watching the Weather Channel and reading about extremes in weather. He also watches cartoons and tells me that he didn't get to have a childhood. His life and, consequently, my life are not typical. I have spent the last 20 years helping him maneuver through life, never working outside the home and depending solely on my husband for financial gain. My husband just turned 60 and I am close behind. What is going to become of our son? It is our biggest worry.
I feel enlightened after reading Amanda's story and watching her video. My youngest daughter has Autism, I never know what to say or when to say something regarding her behaviors. Amanda's point of view seemed to support the feelings I have. It's difficult to be in the middle between when do you speak up in support and when do you hope that people will not judge a book by its cover. I hope my daughter grows to be as intelligent, direct and witty as Amanda. I want her to be able to speak as well for herself and not need anyone to do so for her. Kudos to Amanda for educating the world on Autism.
When my son was diagnosed with Autism, I was out of the country on International trip. My wife informed me on the phone about the diagnosis, not knowing what autism is I didn't worry much. I spent all night researching online about autism. The more I researched the more scarry it was, it became clear I was in for a lifetime of pain and suffering. However, living with my autistic son have been neither, it has been joy and happiness. He is four years old, loving, caring and yes very much autistic. He does speak when he wants to, playful all the time, wears me out because doesn't want to sleep. Wants me to read to him day and night. loves music and dancing. Loves icepops, hard candy and tight hugs. When he was born, doctor told me he looks like a future star, he has retained those looks. I just cannot imagine how Kate, Sioux Falls, could hand over her son to the social services. My son has done considerable harm to his brother and sister including biting but that has almost stopped. Infact his best therapy has been his interaction with his six year old sister and three year old brother. Amanda's story is a confirmation of my view about autism, they are specialist in few areas while rest of us are jack of all trades. Write to me at aviator964@bellsouth.net
Dr. Gupta, I agree...that I wonder how many other people are labeled as "low functioning" or "mentally retarded" who are actually brilliant, and have such unconventional approaches to experiencing life that the rest of us are uncomfortable, and therefore rendered incapable of engaging them to participate instead of writing them off.
Thanks for such a compelling look at this diagnosis and providing an insightful and personal perspective on your experience with Amanda.
I am amazed at the intelligence and self assuredness of this woman. I also get a sense of resentment and a bit of a condesending attitude in there...as if we have, as "normal" (whatever that means) humans, missed the boat on autism. I am curious is she is able to "communicate" non-verbally with other autistic individuals...is she able to interpret their interactions with their environment...and provide answers to those of us who can't understand? A bridge would certainly be helpful...her insight may not apply to all types of autism...but it would be a beginning. This seems to shine a light on the human ego and assumption of superiority based on communication
As a parent of an high funtioning/aspergers son, I am feeling discouraged most of the comments are about how wonderful it is to raise or be around such individuals. Positive comments are helpful, but let's get real.

It isn't so wonderful. It has been quite difficult. My son has made much progress, but it has taken a big "chunk" out of me, his dad, his brothers, his grandparents, and of course our marraige.

Thank goodness there is a greater recognition of and early treatment for these individuals. My son is 21 and has finally gotten his drivers license, and is attending the comminity college. But his quest for normalcy has not been without many challenges. He has been hospitalized psychiatrically at least 8 times. He has been pretty stable on his current medications and counseling, but unfortunately every time the doctors try to reduce them because side effects (abnormal liver funtioning, weight gain, fatigue, and risk of tardive dyskinisia) he has a relapse. These episodes are very difficult.

He is trying to become self sufficiant, but we have serious doubts he will. Yet we try not to communicate this to him. He has been turned down for SSI. He does and can work at a minimum wage job mostly because we INSIST he does.
Fortunately he is covered under my and his father's insurance. But it doesn't cover it all. I will probably have to work until I am 65 in a career I am tired of. I have worked 33 years already as a RN. I am burned out. I would like to change careers, but am tied to my job for the insurance benefits.

As for the increasing diagnosis of autism spectrum disorders, I contribute this to the greater recognition of symtoms. I wonder if some other diagnoses, such as childhood schizophrenia have decreased. Also, for economic and social reasons we have greater tolerance for neuro-mental disorders. We no longer have the family farm where eccentic "Uncle Fred" could live and spend his days rocking, counting, collecting, staring, listening to the same song, reading the same book or watching the same episode on TV over and over. Or, stay at home and not attend school and be forced to fit into "normal" socity. Thankfully institutions were closed down and these "different" or eccentic individuals were forced to attend school and reach their full potential.
But in doing so, they had to come up with a diagnosis for them. Hence, the increase in autsm spectrum disorders.

As a school nurse for the last 12 years I have seen the schools make significant gains in the number of programs and resources available for autism spectrum children and their parents.

Please publish my comment, because I would like to inform parents that it is okay if everything is not so wonderful and rosey, That it is okay and it is normal to feel discouraged, exhausted, and negative about your situation. All we can do as parents, is to do our best and keep trying.

Beth Lueck

Murrells Inlet, SC
Thank you Dr. Gupta for bringing Amanda Baggs to the world's attention. I believe that her story is beautifully meaningful to everyone. Each one of us has value, and we all communicate in our own way. Amanda's way is in the minority for sure - but she is the exception that proves the rule. Each and everyone of us is created with inherent value and we can learn from everyone, and become better human beings by it.
Does she draw or create music or any type of art to communicate in addition to typing on a keyboard?
The Marcus Institute in Atlanta Georgia is an incredable source of expertise in the evaluation, diagnosis and treament of Autism. The Early Internvention Program has phenominal stories to share. 404-367-2767
This is an excellent piece, and it demonstrates how assistive technology can enable someone like Amanda to communicate. I work for DynaVox (www.dynavoxtech.com), a manufacturer of speech devices and software like the one used by Amanda in the video. As a father of a son with Asperger's syndrome who was delayed in his speech, I understand the importance of communication. I am constantly amazed at how tools like the DynaVox can unlock a person's ability to express him or herself and more fully participate in school and other settings. Great job on the story, and I wish Amanda the best.
Hi, Dr. gupta, My son is going to speech therapie since He was very late at talking and expressing himself, now he talks, getting better about his behaviors, I just felt sorry that Amanda is living alone, and this must make her life more difficult.I would like to see her living with her own family, and friends,relatives.She is very intelligent and knows that she has autism, couldn't such person be living with people, and work may be?
Dear Dr. Gupta,
Thank you so much for helping Autistics that can't speak have a voice. I am certain that there are many more adults,children out there that people talk about as if they are not intelligent enough to know they are saying things about them. Autistics are very bright individuals.
Again I thank you for educating the public. We need more people like you.
I identify as high-functioning autistic. In school, they called me elective mutism with autistic features, because I could not form my own sentences but could read from a book and answer yes/no questions on their content. I was reading at a 12th grade level in 1st grade, but couldn't form a sentence until I was 8. Several months before I turned 8, I had a skull fracture. I lost my math and visual skills, but learned how to talk.

I was diagnosed Asperger's at the age of 28, but due to my language delay, actually meet the qualifications for autistic disorder, higher functioning.

I have some problems with the use of the terms high/low functioning in regards to autism. Recent studies based on the use of non-language normed IQ tests have shown that the rate of mental retardation in autistics is only slightly higher than that of the general population.

In addition, how we can respond to IQ tests is linked to our perception of what people want us to do, and whether we have the mental want or physical capacity to make our muscles cooperate that day.

As long as I take sufficient quantities of essential fattty acids (EFAS, also called Omega Fatty Acids) I can usually make the connnection between my brain and my vocal folds (vocal cords, to those of you who do not speak SLP). I also follow the Feingold diet (to help with ADHD and behavior problems) and the Gluten/Casein/Soy free diets. Gluten and casein, particularly in combination, can make me feel "high".

I currently work with caseload of aabout 10 children in a clinic and at their homes, most of whom are diagnosed as autistic. I've worked with over 100 children with the diagnosis.

It is, in part, over-diagnosed. In my experience, children who were born pre-term and spent long times in the hospital, particularly those with a sensory disorder (low-vision, deaf, etc.), tend to be mis-diagnosed autistic. They usually just have severe sensory integration dysfunction (also called Sensory Processing Disorder), in combination with some level of intellectual disability (mental retardation). Those who are blind or deaf with "normal" IQs realize that their stims are not socially acceptable and learn to control them. Those without that much awareness don't, and are thus misdiagnosed autistic.

I adore augmentative communication devices. My favorites are made by the Vantage corporation. I also use some sign language and PECS when working with children. A lot of my kids have problems with muscle movement (dyspraxia/apraxia) that exclude them from being able to sign, but might still be able to understand it. Pointing to a picture is easier to understand and to actually do for most of them.

I get very tired of neurotypicals telling me that they can't tell I'm autistic. Admittedly, I do okay in 1:1 communication these days. However, put me in a group, and I rapidly become overwhelmed, lost, and unable to use speech.

I am active in both our local support groups and the local chapter of the Autism Society of America. However, I am very much AGAINST a "cure" for autism. Quite frankly, I wonder how much most neurotypicals would like to be cured of their personalities? I identify with my autistic "tendencies", quirks, and perseverations, and they are inseparable from me. There is not a neurotypical woman inside me fighting to be free. I am willing to accept treatments that make it easier for me to communicate who I am, but if a cure were available, would reject it, because whoever came out the other end of it would not be ME.

None of us have been kidnapped by autism, or lost in our own minds. Usually, we are lost in an explosion of sensory information imposed upon us by the outside world, or are too busy trying to shut out that information overload to be able to find a way to modulate it effectively enough to establish 2-way communication with the outside world.
My son is 6 years old and falls on the high-functioning end PDD-NOS. He also has ADHD & ODD. I can understand how many people do not understand the gift of intelligence that people are born with when diagnosed with Autism.

We try our best to intervene in early childhood to help develop good behavioral skills. But, what about the parents, caregivers that have no idea what is wrong with their child? People are very judgmental in how "We the parent" are not disciplining our children enough.

My son at age 5 scored very high in his intelligence testing. Scoring in the 98 percential... I had no idea what was going on... I was living with a highly intelligent child with a highly aggressive behavior.
The outside world did not and would not accept his behavior in the public eye.
My idea would be label. A special vest of understanding. Could there be such a thing for a small child that has challenges that are so overwhelming for the family of an autistic aggressive child? Would you stop and help if a child was being so difficult and uncontrollable if you knew that the child had Autism, ADHD, ODD other mental illness?
These are just my thoughts while at work thinking about my life with a little boy struggling with a very powerful child.
Cheerfully a Parent Advocate in Toronto,
Dee
I briefly experienced communication with an autistic student in my public school art class. His free-flowing artwork of line-drawings mostly depicting people seemed to speak. He did this the first day he came in, and tried to do it every time. The amazingly accurate figures filled the pages well with balance, variety of line, and expression. Unfortunately, the parapros who came with him tried to direct him to follow the directions I gave the class. I believe if he and I had had the time one on one we could have communicated without words for more than fleeting seconds, through our art.
I was untrained in any aspects of autism, and I had 25 to 35 other students in class at the same time. We left "no child behind" when it was time for them to go! The schedule was not flexible.
Having Asperger's myself, I generally like to keep up on how the media portrays the Autism Spectrum, from low-functioning cases such as Amanda, to more high-functioning diagnoses like myself. Very rarely do I read an article on the subject I agree with. This post is an exception because it comes to the most fundamental conclusion a non-afflicted person can reach: Any autistic condition is just a different way of doing things. The people who suffer most from autism are generally parents who have a hard time understanding their child's unique mindset. Amanda's case presents the real solution to any Autism spectrum disorder, which is ensuring that we have a medium to effectivley communicate to the world
my adopted son has autistic sprectrum disorder as well as attachment issues.I shared Amanda's story with him. Of course I can't tell how he heard it but I know him and know it's huge for him to see and hear about people who thrive with issues not unlike his. THANK YOU!!!
My son is now 8 and was diagnosed PDDNOS at age 2.5. Amanda's story is true for Amanda, but I don't know if it's true for him? That would be too easy. We have tried everything possible to help our son "learn our language" not because we don't appreciate who he is, but because we love him so dearly and want to be part of his experience. ABA has been very successful for him, he speaks, reads, and is learning to type now. I would be thrilled if he could communicate with me his hopes and dreams no matter what the form of communication as long as I could understand. I am also a teacher and am DISGUSTED with the level of apathy for these children and the INTENSE LACK OF FUNDING given to support their learning. We have been forced to home school our son because quite frankly, everyone else has written him off in spite of his tremendous progress, and NOBODY CARES!!
I am thrilled to see your piece, it intriques me and excites me and makes me work harder to find ways to make life better for him. I would love to see a followup piece about the PATHETIC EDUCATION SYSTEM and how it turns it's back on these beautiful and intellegent children!
I too have autism. I was at one point mid-functioning, but thanks to my parents, I am much higher functioning and am actually attending college. It is very difficult, but with good support, I am making it through. I know how Amanda feels, although I am verbal, I have a much easier time using a computer and would prefer being by myself in my own apartment on my computer than most anywhere.
Thank you for getting out this knowledge about autism. People like us need it to be known that we are smart, we just have to navigate the world differently.
I saw others posted about people with autism finding jobs. I know how that is. I am going to college so that I can stay on my parents health insurance as long as possible since I need medications to be able to function as well as I do. I fear after college because I know even with a degree, there are few jobs I could do. I hope that having a degree will help.
I applied for supplemental/disability benifits from the government, but was not deemed to be disabled enough.
Besides autism, I have sensory intergration disfunction, depression, anxiety, physical problems, organic mood disorder and recently have found out I probably have fibromalygia. I have been told that my physical disabilities restrict how I can work in a lot of ways by proffessionals. yet, I am not disabled according to the government. How much more do people need to be bad off to qualify? How are we suppose to support our selves if the world will not adjust itself to us or give us a chance? I worry for my future and I know my parents can not help me. It scares me how helpless I really am, because I don't want to be.
I just wanted people to know these thoughts through an high-functioning autistic person. Sorry if this is not well written, my thoughts are jumbled tonight.
WE KNOW SO LITTLE ABOUT OUR OWN MINDS AND HOW THEY WORK .I BELIEVE EVERYONE CAN COMMUNICATE IF BOTH LINES OF COMMUNICATION LISTEN AS WELL AS "SPEAK".
Hi Dr.Gupta,

Thanks for doing the program on Amanda. I was sent this link by a friend from US so I did not watch the program but I was wondering whether you could meet and interview a wonderful lady by name Soma Mukopadhyaya at Austin, Texas who is teaching hundreds of autistic kids who have been labelled as low functioning autistic. You would be amazed to see her teach the kids. Like Amanda many of them cannot speak. More information on http://www.halo-soma.org. Soma is also a mother of a teenage autistic boy. What is my interest in all this? I am a mother of an autistic boy and last year I took my son all the way from Australia on the other side of the globe to US to meet Soma and watch her teach my son to learn and communicate using the method called RPM. It was amazing. I wish more parents of autistic children would come to know about HALO. She works with adults too.
Hi,
This is a bit long but I beg you to please read.
I managed group homes for years and decide to move two of the women (one with autisum) into my home. As well as managing the group home my husband and I also did/do foster care for "high behavior" children.
Right now we have a 15 year old foster son that has lived with us since he was 12. He is considered low functioning autistic. I consider him over functioning!! For the 1st 12 years of his live he was "over loved" and had 0 expectations on him. Very loving parents from Somlia and Ethopia. They have told me over and over they didn't know what to do because they never saw these children in Africa and didn't want to ask for help. Of course if you don't ask for help no one offers? $$$$ He was sent to me for a 2 night stay (haha) before he was going to be sent to a hospital setting. After the 2 nights (I fell in love)I asked the ministry to please leave him with us and let us try to help him. He had used up every foster home in Kelowna and no one would have him including the kelowna hospital. The old foster dad dropped him off at our door and said "he is psychotic" and couldn't leave fast enough; he didn't even tell me his name or one thing about caring for him. The very 1st words I said to him (our foster son) was I know how smart you are so there will be no games with me. The look on his face was priceless "I'm busted" He was very aggressive from AM to PM for many many months. We had to re-do that house with a basement suit for him with reenforce walls etc. and move our bedroom downstairs to keep him safe. It took months to get him to sleep through the night. 1st lying with him then sitting on his bed with him then sitting on a chair and each night moving closer to the door and then out the door slowly working towards our room. It has been a long slow process every step of the way but well worth it to see him be able to define a life for himself on his term. With in the 1st two months I pulled him from school to home teach him what a fight for funding between the school board and the ministry. Both thinking it is the others responsibility to support his finacial needs, we needed staff to help us. He has come so far in taking responsibility for himself and his aggression are now down to 6 months apart; but they can last for 6 weeks some times day in day out. GABA really helps him in those times. I know these aggressions will fade with time as he matures; as has the lady who lives with me did and to be honest she was worse. She has made a very happy full life for herself as I am sure our son will. He is finally happy laughing and playful most of the time. He can read and does write for his wants and needs; which of course no one realized because they were way too focused on all his behaviors. We are just now getting a "Chat Box" for him and he is starting to use the computer. We did decide to buy a hobby farm, fully 6 foot fenced so he would have wide open space and room to make his own mistakes. Amanda reminds me very much of our son just older and more life experience. I love Amanda's view and it completely confirms my thought on autisum. Thank you. It drives me insane with the "does he/they understand anything" comments. Yes he/they understand everthing and more than the rest of us It's 2007 can't people think outside the box. P.S. I do have videos of him at the begining and can do some more if your at all intrested. I'm sure his parents would love to share his story. It is very very incredible and has been a long journey with many highs and lows.
I'm glad that she has made this video and I'm not surprised by the fact that a severely autistic person is intelligent and can cummunicate. Of coursether was a time when i would have been surprised. i knew almost nothing about autism or any of the disorders that fall into the spectrum. I'm older now and have had a son who is autistic. He is a beautiful 4 year old who has problems communicating. He understands everything though. He used not to be able to speak at all or even point to what he wanted, i'm sure he was giving cues that I could not understand. But even then by his reactions to other things and to what I would say sometimes, I knew he understood. He is exceptional at learning to work with anything electronic, the TV, radio, DVD player. He knows some of his letters and numbers, i know he knows them, not because he says them but because I encourage him to learn by interacting with hiss environment. When we go into an elevator, i have him push the button, I just tell him what number. I actually get annoyed when an adult in an elevator feels that they have to push all the buttons. Of course they do not realize that this is one of my techniques for helping my child learn our language and skills in a way that he understands. Many people though, when they see him and somehow in a conversation it is brought up and I say that he is very intelligent, they look at me like they think I'm some kind of delusional mom. I think it is highly amusing sometimes too, because he knows that is how many people see him and he toys with them! For example, I enrolled him in a special program for kids who are considered to have early learning problems like Autism Spectrum Disorders and other types of disorders as well. When first enrolled they do an initial evaluation to access their skills, knowledge and understanding of the world around them and their ability to communicate as well. When talking with them they told me that even though his communication skills were low that his understanding abilities were even lower. I at first looked at them in disbelief thinking, "Huh? Are they crazy?" Then as I talked to them, I understood why they believed that. They were judging him according to the normal responses of a normal child and assumed when he didn't respond to them that he didn'tunderstand. Most children will respond in some way, even if all it is, is a facial expression. In actuallity when my son doesn't respond, it's usually because you are pressing him to do something that he does not want to do, is too over stimulating or sometimes he does it just because he finds it amusing. I rarely have that problem with him at home, because I know he understands and so I don't let him get away with ignoring or not responding. He tries it on occassion but all I have to do is say to him, "I know you hear and understand me, you will get into trouble if you do not....." pick up your toys, share, take a bath, take his plate into the kitchen or whatever he needs to do. It took my mom longer though. He played her for a long time before i was finally able to show her by his actions and reactions that he really did understand. Of course she is from an older generation where people with these disorders where seen so differently than they are now. I am proud of her for being able to learn and change. :D
If not caring about who is having who's child, who is dating or breaking up, or being affected by all the teqniuies varius groups use to try to affect my decsions by bypassing reason are a result of my Asperger's, then I hope they never find a cure, infact I don't see it as a disorder, but as order, the ability to actully think correctly.
Discovery Health did a segment on a extordinary boy who can memorize things and do complex math in a matter of seconds. This boy even learned Icelandish in a matter of 2 weeks. He has some erros, but they were shocked at his accuracy.

It was believed that he himself "was" autistic. Its just that he has simply learned to communicate through words and language. Like Amanda has, minus her lack of vocality.

I know I'm no PhD. However I feel this is quite possibly the next step in evolution. The adaption is no longer emphasized on the natural world where we compete with animals. Rather in the world where knowledge is key. Instead of memorizing words and concepts. They can see sound; hear sight. And make connections with certain things, making it easily remembered. This, according to the boy from England in the Discovery health segment. Which could explain why they're so overwhelmed outside of their enviroment.
My son has what is called high functioning autism,he was never able to learn Afrikaans which is our home language. He was able to learn ENglish from the computer and national geographic. I cannot find a school for him. I would be extremely thankfull if I could communicate in his language, the glimses of the humour and intelligence I have had from him is amazing. But because he does not think the way we do , and cannot learn language the way we do he is labelled as less able.
For Coaster, who wanted to know how to tell a child about their ASD.
We have an 11 year old son with Asperger's. We began by laying a foundation for his understanding of Asperger's by being open about our own differences, strengths as well as struggles. After a time putting a name to the description.
Children begin to see they are different or that they are having difficulties in areas (like social skills) that others seem to not be experiencing. Hearing "the word", is sometimes a relief for kids. In retrospect, I think it would have been better to have done this earlier.
Tony Attwood, in Australia, is one of the leading experts on Asperger's syndrome. His latest book "Complete Guide to Asperger's Syndrome" is a wonderful resource for our family. He includes an outline on explaining the diagnosis which we found very helpful.
It is wonderful that your daughter has such wonderful support from the school and her family. I hope that your friend can come to terms with her son's Asperger's and reaches out for the same resources. His differences are or will be soon noticed by others and it seems he is left walking a tightrope without a net.
Behind a veil of authism or is it us behind a veil of preconceptions of what people should be and act like?

Do we grow up in a world where we expect that everything measures up to our own standards without any reserves on what consequences our expectations have on others.

By the way, making eye contact is seen as agressive thru out the animal kingdom. Directly aproaching and touching (invading space)is also seen as beeing agressive. That's something that hasn't been understood for a long time and I certainly didn't until I started to interest myself in alternate ways to train horses.
Wich makes me think now that maybe in a lager picture we "normal"humans arn't quite as normal in our behaviours.
I am a school social worker in Toronto. I have always wondered why they kept autistic children in schools with such rigid structres. I am glad to hear what Amanda had to say about how autistic children learn. I also hope that the education system as welll as parents will take into account what this brilliant and insightful young woman has to say and stop imprisoning the minds of these students.
I also have a question about funding. Why is the government not putting more money into buying equiptment for these individuals which could clearly assist in communication. Not investing in these programs continue to imprison their minds. I have seen many autistic children with behavior problems and wonder if their acting out is a resut of their frustration in not being able to communicate. Would the government continue to deprive able bodied people like this if they had a medical condition? I am glad CNN is taking up the challenge to bring this topic to the forefront so that people can begin to see people with autism as part of our society and not people to be disgarded.
These people have so much to offer. Our society is low functioning not the person with autism...we need to try harder.
I was delighted to read about Amanda - I have a 21 year old son who is considered severely autistic - but unlike Amanda he cant'type. He is so talented musically, has perfect pitch, loves to sing, but can't articulate the words. I have just emailed everyone I can think of to see what programs are out there for typing, and will read Amanda's comments and thought to my son. Amanda you are unmasking the face of autism, how powerful for all of us that you chose to share your personal thoughts.
In 1981 ago I fought to get a Giant Steps program in my city successfully. Why? Because no preschool would take my child, and no therapist thought there was any hope. The leading autism specialiast in the province told me that he was the most severely affected autistic person she had ever seen, with little hope for intensive intervention to work. Can you imagine how that broke my heart? But, instead I got mad, and got moving on changing community vslues. I fundraised madly, and offered myself up as a full time volunteer -to make that difference in real time.

I worked as a full time volunteer Giant Steps administrator for 2 years,( until we could afford to pay someone ) and served as president of the Giant Steps Board for 7 years at the same time. Day by day I saw changes in all the children, through sensory integration, vision therapy, nutritious diets, speech therapy, play therapy and art therapy and lots of intellectual stimulation activities At the time this program was considered highly suspect becuase most agencies working with autistic people and children used a very behaviorial model in which children were offered m&m candies to do any task and a highly paid consultant would do an"outreach" program where they would "teach" the parent how to use the candies and checklists.

What a contrast! Thank God I found someone who thought that autism was not the worst thing in the world and felt excited about my son's possibities.
My son can't speak many words but he is the most cheerful, loving, gentle and kind person I have ever met in my life. He communicates much with his hands, and eyes until people understand him. He is a very talented speed skater, swimmer, with of coursehis own cultural touches.
How fortunate for my son that Giant Steps Darlene Berringer took a chance on my word to do anything to get the program up and running in Kamloops British Columbia Canada, and her gift to my son and 9 other children of her time and expertise - and her belief that autistic people have worlds of experience and knowledge to offer us. His warmth and loving nature are a tribute to the program, and all children who went through it have the same gentle nature. A
Acceptance and respect for differences and positive redirection instead of corporal punishment and negativity are
the philosophic differences of this program.

I think of my son't autism as his culture, and introduce his need to sniff people as a cultural identity issue, when offered a hand to shake, my son will lean over accept the hand, and briefly sniff it.

As a cultural issue - is that any different than a hug, or kissing both cheeks really? You see where I am going with this - eye contact etc.

Thank you for your generosity and in sharing your personal experiences, thoughts, and wit. You have made my day - and I will work even harder to find ways for my son to communicate -

Yours truly,
Marg Spina
Kamloops British Columbia, Canada
The story of Amanda Baggs is remarkable.
I have a son, which is 5 years old, in the ASD Spectrum. As a mother is nothing more sad that seen your kid suffer. I see my son happy now because he has an excellent education which will end by the age of 6 years old when the Canada funding gets cut off and he will have to join the �normal setting� Human right for these little ones is all we are asking, as parents, if some one tells me that I have to die today so my son gets a proper education I would. ABA works for him and so many other kids with ASD why is Canada, such a rich country, masking the �problem of autism� The numbers of kids being diagnosed is getting higher and higher�..what are we going to do with them? Just hope for the problem to go away�.like magic!

Desperate Mom!
There is a wide spectrum in Autism and many levels of function. I am a highly functional individual with mild Autism. I have over come many of my challanges through the years. I was unable to give eye contact for many years, I slowly learned to do so, but not because anyone forced me to. I have the need to be in rythum with my environment ( constantly rocking, standing or sitting). I am bombarded by my environment and sometimes it is very over whelming. I have had to learn to adapt. I really think that there is still so much to learn regarding this condition. I also believe it has something to do with excess androgen in the system. I was born genetically a female, with gender dysphoria. I have never related with people and felt trapped in the wrong body. I truly think that much of these neurobiological conditions are interelated. The sad thing is, society looks at people that are differnt as weird and deviant. We need to start accepting one another for who we are and learn that each one of us has a gift to offer this world.

Please check out my video on current TV

http://current.tv/watch/22405403.htm

I also have other videos on You Tube called Made by Nature.

I am glad Amanda is educating the world.

Regards

Mark Angelo Cummings
Thanks! Amanda -- thank you for your work. Your willingness to tell your story by putting it into our words and our form of communication is so helpful. Myson is 41 and has a form of autim like yours he does type his thoughts but he still needs physical support to do that. On his better days, he can type solo but mostly he needs the support. His thoughts are a treasure to me. The hardest thing has been to watch the critics of "facilitated communication" bash his typing. Thanks for showing that the range of ability in autism is so broad. It is time to debunk the myth that nonverbal people have nothing to say!
We have a 5 year-old nonverbal profoundly autistic child named C.T.
Our school district does not know where to begin, despite their good intentions. At some point years ago, it was Amanda's parents who did something right so that she could become the inspiration she is now. My Aunt Reba put me through law school. What was it that Amanda's parents were able to do?
I think the story of Amanda is wonderful. It gives me such hope. I have a 7 yr old son with Autism who is also non-verbal. I know he is not mentally retarded because he has such a spark in his eye. It is so frustrating because his skill level is so low because of his lack of communication. We don't know what he knows. Because of Amanda, I think one day he will be able to tell us that he knows a lot more than anyone expected.
hi my name is stefanie i have autism and like to coumacte on line to it easyer for me then trying to get my words out at times .maybe we can email each other
Dr. Gupta
I would like to see a follow up story with a DAN physician who has helped children/adults overcome some of the characteristics of autism and other spectrum disorders through natural metabolic remedies.
My daughter is recovering from severe oral/verbal appraxia and expressive language disorder.

Dayna Hebermehl
Thank you Amanda for showing the world that people with autism are intellegent human beings! But Amanda is one of 100's of people with autism that are learning to communicate through writing. HALO is a non-profit organization that has been doing this since 2004. My son was also diagnosed as "low functioning autism" and assessed at at less than half his age. But he has learned to communicate through the program at HALO. This fabulous facility is located in Austin, TX and sees clients in over 47 states and 11 countries. Soma, the woman who developed the Rapid Prompting Method (RPM) taught my son (and many others) to communicate through pointing at letters on a letter board and now he is progressing to a keyboard and handwriting. My son Mitchell, is 11 years old and non-verbal. We first visited HALO just under two years ago. The most wonderful thing about HALO is that they also TEACH austic individuals age appropriate curriculum! It is not a deficit of their cognitive abilities, but a deficit of their ability to communicate. I thank God everyday for Soma Mukhopadyay and HALO. As Mitchell wrote, "HALO saved my life". If you want to visit their website it is at www.HALO-Soma.org
I have a son 7 years old , contrary to what people think , myself and my wife intrepret what he is trying to do and trying to communicate . When we see a twinkle in his eyes we know he is happy, a naughty smile when he is having fun and every moment of his tells us what he is trying to say.

I am his dad so I understand his unspoken words but I am at loss when I think into the future.I am not sure how the world would even try to understand him when his parents and dear ones are not around.

But then I think we the parents of all autistic kids are the gifted ones who have been given the responsiblity to bring up these special kids . I am hopeful there is light somewhere where these kids can shine.
I have five year old son on the autism spectrum. He can't express himself that well, but you should see him on a computer. Please do more stories on autism, there is such a broad spectrum of this disorder. More and more children are being diagnosed with this disorder. My son also has mitochondrial disease which they are finding in more PDD-NOS children.
My daughter is now 7 years old. Around the time she turned 2, we began to notice things, hand-flapping, covering her ears, and other sensory-integration issues which we had no name for at that time. I asked her pediatrician if he thought she had any autistic behaviors, and he said, absolutely not. She smiles, makes eye contact. Fast forward to age 6, after anxiety attacks, double vision, pneunomia, mycoplasma infection in throat...to diagnosis, finally, of lyme disease. You see, our entire family has been diagnosed with lyme disease in the last year. We think our daughter has had it since birth, contracted from me in utero. There are many other parents of autistic spectrum children discovering that their children are testing positive(my daughter's lyme western blot antibodies tests were very high, and still are). Check out lymeinducedautism.com. Also watch out for an ABC News Primetime Medical Mystery Special which will be aired this Spring, on how lyme is misdiagnosed as MS and ALS. Lyme is a disease of the central nervous system. I believe that millions of people have lyme disease and have passed it on to their children. My daughter now has OCD and Tourettes, but overall is improving on antibiotics. Thank God for the Lyme Literate doctors who are trailblazing saints and shame shame on the CDC for doing nothing. Dr. Gupta, please talk to Columbia University and ILADS and learn about lyme and autism. Please get the word out and help these kids. I don't believe all autism is caused by lyme, but doctors need to look outside the box for causes, autoimmune problems of parents, infections, etc. Many children improve with lyme treatment.
As the mother of a 20-year-old son with ASD, I too am curious about how Amanda learned to type. My son has never shown interest in using a keyboard and has only a few signs he uses to communicate. I will try to locate Soma Mukhopadyay and learn more about RPM. Thank-you for the segment!
Well done. It's remarkable to note how respectful and pro-Amanda the comments are here, thank goodness. Contrast this to the Ashley X, "Pillow Angel" story recently reported. How little respect and autonomy was afforded that young girl with cerebral palsy who underwent mastectomy and hysterectomy at age 6 to circumvent normal development, and high-dose estrogen treatment to fuse her bones in order to keep her small and portable. To fit "our" world. The media, the docs, and even families surprisingly were all over the "Ashley treatment" like it was the greatest thing since sliced bread.

Readers please take note how Amanda Baggs, this remarkably insightful woman, states the reason for creation of her remarkable video in her blog posting at http://ballastexistenz.autistics.org/?cat=135. "This is dedicated to Ashley X and everyone else who�s ever been considered not thinking, not a person, not communicating, not comprehending, and so on and so forth...I�ve wanted to make it for a long time, and somehow Ashley X�s situation pushed me into the final stages of it."

Framing the message in media is everything, isn't it? People respond in kind. World views can be changed with leadership in this regard, with respect for humanity, with a willingness to listen (albeit a bit differently then one might be used to), and if all of us "just tried harder." We have great capacity to embrace one another. All we need is a push in the right direction. Thank you, Dr. Gupta for your leadership in this story. Or perhaps I should say, for letting Amanda lead. Humanity just went up a notch.

Personally, as a mom of a young man with a disability, I am grateful for Amanda Baggs and her eloquent voice.
I can't believe what I just read, as I sit here with my eyes filled with tears, my heart longs for that outreach with my children. Both our sons are autistic, non-verbal just like Amanda. The system has labelled them as low-functionning autistic, just like her, no matter how many times I try to explain to everyone that they are in there somewhere, they just haven't been shown the way out. It is very hard to fight for your beliefs, when no one understands. They are beautiful 7 & 8 year old boys, our whole world revolves around them, it's heartbraking not to be able to understand them, all I can do is love them & spoil them, all I want is for them to be happy & safe. One day perhaps they will let us into their world, for so many years we feel like we've been just living along them without truly understanding them. This report has given me hope because every day is a battle to make sure we as a family make it through. One day we will say the light. Anny Raffa
I have a 22 year old son with autism, very verbal but is at a 12 year old level. Although he is aggressive, he carries some of the charactoristics as Amanda..My son has better eye contact than when he was young, he was always trained to look at us, or he wasn't focusing in what anyone was saying to him. This was a very good segment CNN aired....
I saw the program on Amanda and was absolutely fascinated with it and I learned so much about autism and opened my world of understanding in ways I was surprised. I have to say it was one of the most interesting shows I have ever seen and so appreciated knowing about this and having my eyes opened to their world.
I feel I will be able to connect even better now with those who may be different than me and how we often view others, and am so grateful for this new knowledge. Thank you so much for such a thoughtful and informative show Anderson, and for the chance to watch respected Dr. Sanja Gupta go through this process himself of learning more about it.
Amanda has just blown the "assumptions"of intelligence and what an autistic individual is out of the water!there is so much more to learn from autistics themselves vs doing blind studies,and arguing about causation and epidemiology.There is a Person,a human side that is often ignored.Autistic children grow up to be autistic adults.

There are many autistics that are challenging what science has told us to believe.Tito Mukhopadhyay is another.His mother Soma Mukhopadhyay has created a method RPM(rapid prompting method)that not only taught her own "severly"autistic and non verbal son to learn and communicate independently,but she has worked with hundreds of autistics and others with communication challenges.Amazing is one word to describe what she has done.If you go to Halo-Soma.org,you can read about Soma and Tito,view video of Soma working with children for the 1st time.Children that most thought did not have a normal level of intelligence and never been exposed to academics.With a low tech method such as RPM,Soma has been able to teach individuals to communicate.Parents,please do not give up on your children,there is so much more that we have to learn from them.I am finally learning who my son is since we've started using RPM.I don't have to guess what he's thinking or wants.It's just the beginning of a new life for him,one in which he can express himself and feel confident and proud of his accomplishments!

Dr.Gupta,if you read this post you will be amazed at what you find if you go to HAlO-Soma.org. It would be a great story for you to bring to the rest of the world.
My son Ibrahim is nearly 5. He is also autistic. I was told he would never speak and in the beginning of our journey he didn't respond to much anything. He was quite normal at birth, actually quite intelligent, able to read along with his books. Slowly I lost him completely. He reminds me quite a bit like this young lady. I refuse to let people treat Ibrahim as some sort of freak. Now at almost 5 he attends public school (autism class) and receives speech in and after school. He still only says a few words. He is quite amazing on the computer and to see him play video games is something in itself. He draws pictures of his family and loves music. He has started to sing songs although he makes up new words. People like Ibrahim are the color to our canvas. I couldn't amagim life without him. I see textures and shapes in a whole different way. I watch the way he views things and notice how much of the world the "Normal" people miss. We just need to appreciate all people for what they add to the world. Ibrahim has his whole life ahead of him. He was brought here for a very important purpose. For now that is between him and God.
Autism is just a word that is used to describe what is becoming a very broad condition usually referred to as ASD (Autism Spectrum Disorder). If current studies that indicate about 1 in 150 will have some form of this isn't it about time we start to find some answers. Amanda surely has opened some eyes with her abilities. Maybe it's time we also open ours and take a very hard look at this whole situation. Why is it that most kids are diagnosed around 2 years of age but Amanda didn't lose her speech until her teenage years? I'm sure that there are others who haven't been diagnosed until later. Most average people know very little about autism. When you live with a child who is developmentally delayed it changes your entire world. I applaud Amanda and anyone who has the courage to really look deeply into this for answers. The average person on the street just doesn't care until it DIRECTLY affects them or their family. I am the father of a 13 year old son who is extremely delayed.
Dear Dr. Gupta, I wanted to once again thank you for your respectful and wonderful interview of Amanda Baggs. I am the mother of a 25 year old son with autism who though verbal was dx. also with mental retardation. My son as many others has been using facilitated communication to assist in communication for fifteen years which has pretty much negated any ideas experts had about him. Many persons throughout the country who have used f.c. are now independent in typing with this method (though they usually type with one finger but almost across the board show vastly more ability than professionals had surmised. Facilitated communication has been used in large groups in the Syracuse area, Whittier Ca. area, Midway training center Minn. to name a few for a very long time. This is a method to improve communication via typing or letterboard based on a componant of autismof very poor motorplanning ability that this method accomodates. In summary it has been known by many for a long time that the conventional ideas about 70% of persons with autism being mentally retarded is absolutely ridiculous. The question is why have so many persons especially in the professional world gone to such great lengths to hide the information that so many are now typing independently and showing unexpected abilities. As my son typed " I understand people thinking I am mentally retarded but not them wanting me to be." I wanted to again thank Dr. Gupta and Miss Baggs for helping to dispell the myth that people with autism have little capabilities. It is a lesson to us all that we should never judge a person by what we see because just maybe the person who seems to lack caring is the most empathetic, or the person who seems the least capable is in actuality taking in more than you. Thank you Anne O'Neil
Dr. Gupta,

My sister Markie is 18 years old and living with Autism. She also doesn't communicate in words but has many other ways of expressing herself. She is fully dependent of my parents to care for her and probably always will be. When I watched your story on Amanda it gave me hope that maybe one day my little sister could be heard better if we try harder to listen and maybe one day she too can live on her own. Thank you for finding Amanda and bringing her story to life because it is a beautiful one.

Sincerely
Gloria Van Dusen
I think this article and the exposure Amanda is getting is important in creating a much needed awareness not only on the pervasiveness of autism, but more importantly on the mounting volume of knowledge indicating that these individuals, of all age groups, are so very much more than people are expecting them to be. These beautiful human beings KNOW... they know and understand what you say in their presence to others, what you think of them, how you feel about them. I married a beautiful woman that has a 7 year old son with autism. The really great thing is that her ex-husband is still in the child's life which brings me to the first really important point:
1) Managing autism is a full-time, sometimes 24-hr effort (in addition to whatever jobs and careers you may have) that needs to involve an extended family/community. If it wasn't for the fact that he is with his father on weekends I don't know how we could manage, since at this time, my wife is homeschooling him. We also have been blessed with volunteers from local colleges with Special Ed backgrounds that provide a more skilled "baby sitting" service. We affectionately call these individuals "shadows". We've seen this approach used by people with means where the Shadow attends a regular school with the child. Which brings me to the second important point:
2) Autism is expensive and while we applaud organizations like Autism Speaks and others who raise millions of dollars for needed research, we also need funding from non-profit, federal, state, or local gvmt sources to defer the costs of Shadows or the various intervention modalities; ABA, Playroom Therapy, GFCF diets and supplements, RPM, Sensory Gyms, biofeedback, facilitated communications, or even just and eeg to determine the existence of seizures. I don't see any leadership in the health insurance industry on these issues. Research will help a child 5-10 years in the future. What about the families in crisis right now who are selling everything they own and going into massive debt to manage life on the spectrum? This is a national health crisis and our politicians needs to take a more proactive role.
I loved the interview as I watched on CNN and your blog. It so fits with a piece I am working on my own blog.

If we can take the time and energy (it does require both) to get to know the person not just the Austism there is so much to learn.

My son, Billy Ray, speaks but isn't always able to communicate his physical and other needs with his speech and is not able to communicate in the way that Amanda. However, with much effort I have learned to read what I call "communication by behavior". Dr. David Pitonyak calls it "messages".

If we hear either by communication such as Amanda's or by reading behavior we fine there is a reason for everything someone with Autism does. That's for bringing that out more.

Society tends to forget that Autism is a spectrum disorder. Not everyone can do the same thing but with adaptation most can contribute in some way. Amanda has done a lot for awareness with her videos and the interview. Billy Ray touches his world by delivering Meals on Wheels to seniors.

Thanks again,
Peggy Lou Morgan
I am awestruck. Please, oh please, put this all in a DVD so I can share it with others who need to see.
Dear Dr. Gupta:

Thanks for the very informative story on Amanda Braggs and Autism, My wife and I are parents of a 21 year-old daughter with Autism. I have written to Amanda to thank her for sharing her story. However, we feel that our daughter could benefit immesely from the communication devise that Amanda uses.We would like to know how we could get information about the communication devise that Amanda uses? Is it a special computer and syhthesizer? Is it a complete or sepaarte unit and who manufactures such equipment? We have also emailed Amanda to obtain any information she may have and thought you may also know something about this communication devise.
We will appreciate your aasistance.
Thanks.
Sincerely,
Leyland Gudge
Dr. Gupta: What I found so interesting about your interview with Amanda is that YOU, being a medical professional with expertise in brain function, had obvious difficulty understanding her. Like your question to her about waving her hand at another autistic person. You appear to think that our social norms should be made part of her goals. Isn't that the central problem--we judge others by their failure to meet our expectations.

Not that I'm criticizing you. As the mother of two children with ASD, I live in a daily communication gap with those I love the most. I get angry when I don't understand them and when they don't respond "properly" to me. It isn't their problem as much as mine. And if I have such difficulty with comprehending my own children (who are so high functioning they appear "normal"), I'm not surprised that others have problems in understanding and responding to them as well. The sad thing is that the reaction of others toward my children isn't tempered by any commitment to love them.

It's so easy for us to see other people with obvious differences or alien thinking patterns as "non-persons," as Amanda points out. If they are different from us they can't be one of us. As an expert in brain function I'm sure you know that the human mind looks for patterns to make sense of the world. We seek sameness because it makes us feel secure. Making room in our thinking for exceptions to the social rules we have set requires a lot of effort on our part. For some, it stretches them beyond the limits of their ability to bend. When this inflexibility denegrates the worth of others its called prejudice.

I hope for Amanda's sake, the sake of my children, and all the variety of other people we refer to as autistic, that the popular perception of their differences changes in the years to come. It isn't sameness that makes our society healthy, its the freedom that we have to express our individuality while living in community with others. I would like to see us strive to make a place for everyone on the spectrum to fit comfortably into popular society.

Perhaps we need to first change our perspective of the "quality of life" issue. Being productive and making an income should not be the criteria we must satisfy in order to be seen as a successes. Sometimes its those who show us how to live with adversity, disappointment, lack of resources or poor physical health that bring us the greatest benefits.

Really, which of us has it all together anyway? Would my life be perfect if I simply had two neurotypical kids? I don't think so. There would always be something else I'd like changed in my life. No, I believe the key to expanding our vision--for our own benefit and that of others--is to see the good of what we have and then accept others where they "function".

I want my children to be accepted by society, but more than that I want them to be true to themselves. Thanks to Amanda, other people on the spectrum can learn that it's not bad to be different. Hopefully, after seeing the video my daughter will stop feeling so disapproved when she's compelled to do her handflapping in her general ed classroom.

People with autism aren't broken. They just need a workable means of communication that effectively reaches our understanding. On our part, we need to let them know that whatever they think is their individual potential, we will help them reach it.
I am so fascinated about your story, Amanda. I recently met a young African-American boy, aged four, in my new community here who fascinated me as well. When I first spoke to him, his mother told me, "He don't talk." She said he used to but he had stopped. I asked if he had experienced a trauma or illness and she said he had not. He was clearly intelligent but did not respond normally to verbal cues and was very hyperactive. I asked his mother if he had been tested for ADHD and she said he had been to a neurologist but they had no idea what was wrong with him. He repeatedly let my dogs out of my bedroom, and though they are unpredictable with children, they amazed me by treating Ray-Ray as if he were one of them, and he was delighted as I have never seen a child delight in something! Most children are afraid of them. When his mother and his baby sister were getting ready to leave his mother said to the baby, "Let's go bye-bye," and Ray-Ray was sitting on my lap and whispered ever so softly, "Bye-bye." In the days following, I couldn't stop thinking about Ray-Ray, and I wondered if his spoken phrase was just echolalic or if he still had some fragments of real speech, if Ray-Ray was autistic and no one had guessed it, or what was in his special world. The schools here are not so good at reaching kids like him and I cringe to think what lies ahead for him because he really is bright, I can see it. Thank you Amanda for showing us your world.
It is sad to hear many parents write that they know their child is "in there", but that their child is not capable of writing as Amanda does. While it may be true that many of these children will not be able to type in quite the same way that Amanda does, it is possible that many can learn to spell out their thoughts with support. Amanda is able to type independently, but no one knows how many individuals with autism can learn to express themselves through typing or pointing to letters on a letter board with appropriate physical and emotional support. With practice and fading of the support many learn to type independently.
If you'd like to learn more about it, contact the Facilitated Communication Institute at http://soeweb.syr.edu/thefci//
I am a speech/language pathologist and have used Facilitated Communication (FC) with dozens of individuals. Some learn quickly and others take considerable time to get started, but once they feel the power of communication, individuals who seem to have almost no attention span are eager to express themselves. The difference that communication can make in the life of an individual with autism is incalculable. Any form of communication that will work for a specific person is well worth pursuing.
I have a five-year old son with autism and I know he is aware of his world around him. He is nonverbal, but not noncommunicative. He communicates through smiles, tears, hand-leading, and touch. I believe him to be very intelligent, we just haven't tapped into the communication method that will best serve him. Thank you for making others aware that autism DOES NOT mean mentally retarded, but rather, overlooked and misunderstood.
This segment was very exciting. I have often felt that as human beings we are very narrow-minded about the things that seem to make us different. We can open up our world and human experience so much by doing exactly what you did in your interview with Amanda. I have always wondered what it is like for those with autism, and how we may seem to them. With more exploration, we can certainly become broader, compassionate, humanistic people who find more that brings us together, rather than that which separates. We have so much to learn.
Thank you for helping make more people aware of this intriguing disorder. We have a son with autism. He is quite verbal, but still is considered mentally retarded. He loves to talk to people, but mainly about what he is interested in. Most people are very understanding and realize he is different, but there are others who don't care to be bothered and would rather not interact with him. So many times, my husband and I have commented, "If only we could draw him out. He is in there (his body and mind) somewhere." Let us hope for continued research for this disorder.
I can only echo the sentiments of Sharla Jones, from Straford. This type of video does nothing for those who have not experienced much time with different children and adults with Autism spectrum disorders. It creates a false conception that all autistic children and adults are capable forming the complex sentences and thoughts that Amanda does in the video. It also gives people the impression that all people with Autism are merely trapped, but you can solve their communication defecits by slapping a keyboard in their hands. This creates false hopes and unrealistic expectations for parents and loved ones.

I am not saying that the level at which Amanda uses English cannot be reached by other people with autism, however, this video and your assertions makes people think all autistic people are just like Amanda.

The same thing with Temple Grandin. She is also amazing, and a great example that the diagnosis of autism spans across such an enormous plane of severity. Again, not every child with autism is like Temple Grandin, or Amanda Baggs, or any other person. Autism is just the label that describes their behavior. The causes of which are some form of neurological impairment that we are just beginning to understand.

What would be beneficial is for people to start to understand that Autism is nothing more than a label, and the individuals who get this label exhibit particular behavioral excesses and defecits. People must start to understand that an individual with autism is just that, AN INDIVIDUAL. Each person with autism needs serious therapy and devotion from loved ones to identify which behaviors must be targeted in order to get them to live the happiest, healthiest, and most independent life they can.
I have been reading the postings on this blog, and I find that most of the writers are stunned at Amanda's ability to express herself through writing. There is no doubt that Amanda is a remarkable woman. She is incredibly bright, insightful and witty, and I am one of her many fans.

But, as an individual with autism, Amanda is not alone in her ability to express herself through writing. There are many people with (excuse the use of the misleading term) so-called "low functioning" autism (and other severe developmental disorders) who, though unable to express themselves through speech, have learned to communicate with the help of Facilitated Communication Training. Several in this country (and other countries) are college graduates or are currently attending college. Some have written, or contributed to, books about their experiences. Some are able to type independently, but continue to need some support when they are stressed or fatigued. Unfortunately, the neuro-motor aspects are not yet fully or universally understood. Needing physical support does not mean that the individual's intellect is impaired. These bright, misunderstood individuals--of all ages--are out there. I would be happy to help Dr. Gupta to get in touch with some of these wonderful people. I hope Dr. Gupta will introduce more of them to the world.
H.James, Pleasant Valley, NY
rnhjames@earthlink.net
There are many adults who are hidden from the real world because of their autism. My son who also lives in Burlington, VT has a college degree but is unable to obtain any paid employment. There seem to be no employment specialists who are able or willing to help the autistic person obtain work. When my son applies for work he is always told he is well qualified but they hired someone else.
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