http://well.blogs.nytimes.com/2008/02/28/the-language-of-autism
The Language of Autism
Are people with autism trapped in their own world? Or are the rest of us just trapped in ours?
After seeing 27-year-old Amanda Baggs, featured in this month’s Wired magazine, you may rethink your views of the so-called “normal” world. Ms. Baggs, who lives in Burlington, Vt., is autistic and doesn’t speak. But she has become an Internet sensation as a result of an unusual video she created called “In My Language.'’
For the first three minutes of the video, she rocks, flaps her hands, waves a piece of paper, buries her face in a book and runs her fingers repeatedly across a computer keyboard, all while humming a haunting two-note tune.
Then, the words “A Translation” appear on the screen.
Although Ms. Baggs doesn’t speak, she types 120 words a minute. Using a synthesized voice generated by a software application, Ms. Baggs types out what is going on inside her head. The movement, the noise, the repetitive behaviors are all part of Ms. Baggs’ own “native” language, she says via her computerized voice. It’s a language that allows her to have a “constant conversation” with her surroundings.
My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings.
Far from being purposeless, the way that I move is an ongoing response to what is around me….The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all. But it is a way of thinking in its own right.
Ms. Baggs does far more than give us a vivid glimpse into her mind. Her video is a clarion call on behalf of people with cognitive disabilities whose way of communicating isn’t understood by the rest of the world. As the story in Wired points out, Ms. Baggs is at the forefront of a nascent civil rights movement on behalf of people with autism.
“I remember in ‘99, seeing a number of gay pride Web sites,'’ she tells the magazine. “I envied how many there were and wished there was something like that for autism. Now there is.”
Watching Ms. Baggs rock and flap is to see a person most of us would define as disabled. And that’s why the impact of the computerized voice and her cogent argument on behalf of people with autism is so powerful.
In the end I want you to know that this has not been intended as a voyeuristic freak show where you get to look at the bizarre workings of the autistic mind. It is meant as a strong statement on the existence and value of many different kinds of thinking and interaction in the world….Only when the many shapes of personhood are recognized will justice and human rights be possible.
Update: To read more about the autism activism movement, see “How About Not ‘Curing’ Us, Some Autistics Are Pleading,” which appeared in the Times in 2004. To read the story, click here.
This is something I have been struggling with since my eldest son who is now 12 was 'diagnosed' as having Aspergers Syndrome (the high functioning end of autism). It has been an ongoing battle in many ways, for me to accept him as he is, and then to try to find ways to help him to grow up in this world. If it hadn't been for him I certainly wouldn't be where I am today; I have followed his lead to transform myself into someone who is better able to love him and understand him, and lastly to be an advocate for his needs. I don't join any groups or movements, just endlessly quest.
Interestingly, in the light of Bodhi's post about our shadow sides, I have often felt that my son reflects my shadow back to me, maybe because he is so open to it. He has no way to block it out as he is endlessly receiving and responding to the energy that surrounds him. Maybe all children are like this .... I don't know. I just know that I must love my son for who he is and not what anyone else (especially me) wants him to be. And that's hard and painful right now. School has got increasingly difficult for him where the pressures to conform and be seen as 'cool' are hard for him to deal with. Right now he is full of shame and anger, and I just hope that by withdrawing him from school to educate him at home, he will be able to relax and let his true self shine.
I don't know why I'm writing so much - I never intended to get so personal about it all. Maybe it's because I feel that you guys will understand, and there's not many around who do.
with love and light
Marian
http://www.thestillpoint.co.uk
http://www.marianmills.blog.co.uk
Dear Marian,
I do not know if you are familiar with the work of Robert O. Young, PhD, author of the "pH Miracle"? Simply put, Dr. Young relates all decease and illness to our bodies pH imbalance. Our bodies natural pH level is 7.365. Unfortunately we live in a world that thrives on junk food and foods that are laced with sugar and chemical additives.
For many people this has a devastating effect. Everything from allergic reactions to mental changes that do not respond to treatments. You can try something for your son that does not involve medicine or medical treatments.
Just make sure that everything he consumes is pure food, organic, and absolutely free of any additives – MSG, Nitrates, Aspartame, or any artificial sugars, corn sugar, or refined sugars of any kind. This means purified water to drink, and absolutely no junk food, no white sugar, white table salt, or white flour or wheat products in your son's diet. Also, do not use a microwave oven to heat any food that your family eats, not even to heat water. Mainly a diet of fresh organic whole fruits and vegetables, especially leafy green vegetables and as much of that raw as is possible. That way you maximize the nutrition and enzymes in the food one eats. By the way this diet is the best for all members of your family.
To help measure the Acid/Alkaline balance in yours or your son's diet. Use Litmus Tape (pH Tape) that you should be able purchase at any Health Food Store. Use this tape daily to check the pH level of his Saliva and Urine. It should be maintained at pH 7.2 to pH 7.6. From 7.3 and higher the body is Alkaline which is what you want to maintain. Below 7.2 is Acidic which is where problems with health begin.
I have been following Dr. Young's DIet recommendations now for the last three years. My weight is now Ideal with the loss of 25 pounds, my migraine headaches that I have had for over 60 years of my life (since my early childhood) have ceased. I am
now 71 years old and am in the best health of my life and I take no medications for anything.
Dr. Robert O. Young's books about the "pH Miracle" are all available on Amazon.com and they are all highly recommended. I hope you will check this out. I worked as an instructor with people with handicaps for 9 years and I know how difficult Autism
can be to work with. I have come to realize how important ones diet is, and that is a very good place to start for the over all betterment of all things concerned.
With God's Love for you and your son,
Carl Azcar
Is it your shadow that feels uncomfortable about sharing your experience with your son?
You just reminded us all of how to deal with all the people that some might see as "difficult" in some way or other. Your suggestion that maybe all our children are reflecting back our own shadows is an interesting idea to give some thought to. If the child is interacting with what he/she feels in their environment, of course, we, their caregivers, are the strongest part of that environment. They would respond to what is being manifest from us, rather than what we say we are. Thank you for giving me this new thought to chew on for a while.
Bles you for your sharing,
JoyAnna
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Dear fairyfarmgirl,
Thank you for reinforcing my comments about the importance of diet. It is the most important thing in a child's life. White sugar and
food additives are by far the biggest culprits and the biggest causes of all types of hyperactivity, ADD, and other learning and other behavioral problems. An alkaline body enables the body to remain balanced and keeps the immune system high. For a small child is a very important factor.
With God's Love,
Carl Azcar
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what a powerful post. i almost understand. in couples and groups we people are always talking...or singing.......or focusing on limited surroundings. that is why i get aggrivated by constantly running televisions and idle chatter....because i am trying to listen and smell and look at all that is around me....taste the air. it seems like the world never stops being loud....except at night. but even in silence, there is always a hum or a whine......always.
i don't know the causes of autism or if it is a ''disability''. But I do know that as human beings, there is a consistent and constant stream of stimuli. Our ''reality'' is very loud, very bright, richly scented, rough, soft and smooth and sharp. It is very enjoyable and also very accosting.
the melody she sings is haunting to me.
ps....thanks Ms. Doris for your reply. I hope that it is helpful to MMills.
With a deep breath of compassion.
Misty
Fain
I just wanted to thank you all for your very deep sharing and support here. The universe sometimes presents us with major challenges, yet when we have a whole community backing us up, it makes turning these challenges into opportunities for growth much easier. With lots of love and gratitude, Fred
Hi Carl!
I am very impressed with your take on food, diet, ph balance, etc. This topic has been one of my passions since the 1950's when I read Adelle Davis's book We Are What We Eat. Trying to gain weight and get real macho I ate mostly protein and became so acidic I could turn a silver ring black in a very short period of time. I also worked with special children and worked as a speech therapist in a special school for 10 yrs. I was appalled at the lunches the kids would bring to school or that the school would supply. We all knew that the 2 days after Halloween, with all that candy,would be difficult. I finally got a few others to listen to me, but I could never make major changes as the US gov''nt supplied some of the worst food at no cost.
We have many areas of common interest. My wife and I have had opera subscriptions to the Met for over 40 yrs.
I'm new to the team, how do I contact you?
Jim