Amanda Baggs y su poderosa voz

Living with autism in a world made for others

• Amanda Baggs, 26, is part of new generation of adults with autism
• Baggs communicates using a computer or a voice synthesizer
• 600,000 adults have autism in the U.S., according to the Autism Society of America
• No cure for autism; precise causes unknown
By A. Chris Gajilan
CNN
(CNN) -- When I walk into her apartment, Amanda Baggs makes no eye contact. She doesn't come to the door or raise her hand to greet visitors. In fact, I'm having a hard time discerning whether she even knows I'm there. I say hello and introduce myself, but she remains silent, sitting at her desk, staring out the window, rocking slightly back and forth.

Amanda Baggs is a 26-year-old woman with autism. I've been corresponding with her for weeks via e-mail. I've read her Web site, and from her I've learned a great deal about living with autism.

A video she posted recentlyon the Internet describes how she experiences the world. "My language is not about designing words or even visual symbols for people to interpret," she says in the video. "It is about being in a constant conversation with every aspect of my environment."

Admittedly, it's hard to recognize her in real life, after meeting her online persona first. (Read Dr. Sanjay Gupta's thoughts after meeting Amanda Baggs. )

I awkwardly carry on a one-sided conversation, until she grunts. My attention shifts to her computer slowly booting up. She clicks on a program. A keyboard diagram fills the screen. She begins to type at a staccato pace. We begin a conversation. I talk. She types. (Watch Amanda communicate in her own way)

This is the Amanda I've come to know over the past few weeks. She's highly intelligent, well read and has a great sense of humor. She never makes eye contact, but there is no doubt she is interacting with me.

Amanda is part of a new generation of adults with autism. The Autism Society of America estimates that 600,000 adults are living with autism in the United States. That number will most likely skyrocket, given the CDC's recognition of an increase in the numbers of children with autism. The newest numbers suggest that one in every 150 children has autism.

"The field as a whole has really neglected adults with autism," says Dr. Eric Hollander, psychiatrist and head of the Seaver and New York Autism Center of Excellence.

Adults with autism live normal life spans and may require long-term medication, therapy and residential placement. Hollander says the average cost of caring for an individual with autism over a lifetime can be several million dollars.

Autism treatment and research are undeniably centered on children. The goals are early diagnosis and intervention. They're aimed at reducing disruptive behaviors and eventually mainstreaming children with autism into school and society.

At its core, autism is a developmental disorder of communication. There is no cure. No one knows the precise causes, but recent science points towards a genetic component with a possible environmental trigger.

Amanda Baggs has severe autism. She didn't cry when she was born. She had to be taught how to nurse. As a little girl, she rocked her head back and forth but could speak. As she grew, she would go longer and longer without speaking, until her spoken language disappeared altogether. (Read Amanda's post to the AC 360 blog on CNN.com.)

She slowly learned how to type. Now, she relies on her computer or a voice synthesizer linked to a keyboard to interact with people. According to Hollander, "You might think that these individuals are mentally retarded or have no verbal skills, but in fact, they're not mentally retarded. They really understand what is going on and if they utilize a communication device, they can really communicate what they are thinking and feeling."

For Amanda, it takes a great deal of energy to think in words. It is not her natural state of mind. "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." (Watch why "normal" communication isn't for Amanda)

The Internet has allowed Amanda to communicate to the whole world. While standard body language and facial expressions are lost on many with autism, she says many non-verbal people with autism have the ability to communicate with one another through autistic body cues.

Thirty or 40 years ago, life would have been different and much harder for Amanda, says Morton Ann Gernsbacher, a cognitive psychologist who specializes in autism at the University of Wisconsin-Madison. "The Internet is providing for individuals with autism, what sign language did for the deaf," she says. "It allows them to interact with the world and other like-minded individuals on their own terms." (Ask Amanda your questions about autism. )

These days, Amanda Baggs lives on her own terms. With the help of an agency, she moved from California to Vermont about a year and a half ago to be closer to a friend.

And what does Amanda think is the hardest thing about living with autism? "Having to navigate a world that is, on all levels, is built for the abilities and deficits of people who are not built remotely like me."

A. Chris Gajilan is a senior producer with CNN Medical News

Find this article at:
http://edition.cnn.com/2007/HEALTH/02/21/autism.amanda/index.html

Blog de Amanda

El autismo es más común de lo que se creía en EEUU

Por Maggie Fox

WASHINGTON (Reuters) - El autismo es más común en Estados Unidos de lo que todos creían, ya que afecta a alrededor de uno de cada 150 niños, informaron el jueves los Centros para el Control y la Prevención de Enfermedades (CDC por su sigla en inglés).

Dos sondeos realizados por la agencia al respecto incluyeron a 14 estados y son los estudios más amplios y exhaustivos referidos a cuántos niños tienen autismo.

La investigación mostró una amplia variación entre los diferentes estados, que fue desde 4,5 por 1.000 niños con desórdenes relacionados con el autismo en West Virginia hasta 9,9 por cada 1.000 chicos en Nueva Jersey.

"Ha habido mucha preocupación sobre cuál es la prevalencia de autismo en Estados Unidos y realmente no hemos tenido los sistemas de datos para responderlo por completo," dijo Catherine Rice, de la división de Defectos de Nacimiento de CDC, quien colaboró en el estudio.

Los sondeos se centraron en la observación de niños de 8 años.

En promedio, los expertos hallaron que cerca de uno de cada 150 niños nacidos entre 1992 y 1994, o 6,7 cada 1.000, padecían autismo. Estimaciones previas habían colocado la incidencia en algún lugar entre uno de cada 166 y uno de cada 175 niños.

"Finalmente, podemos concluir el debate sobre la prevalencia de autismo en nuestra nación y focalizarnos en brindar los servicios y el apoyo que las familias necesitan," manifestó Lee Grossman, presidente ejecutivo de la Sociedad de Autismo de América.

Los informes son los primeros de la Autism and Developmental Disabilities Monitoring Network (Red de Control del Autismo y las Discapacidades de Desarrollo).

"Verdaderamente creemos que estos datos son importantes porque representan el panorama más completo y preciso de los desórdenes del espectro autista en Estados Unidos hasta la fecha," señaló Rice durante una entrevista telefónica.

Los tipos de "desórdenes del espectro autista" van desde el autismo, que puede incapacitar severamente el habla y la conducta de un niño, hasta el síndrome de Asperger, un problema de comportamiento mucho más leve.

Los especialistas esperan emplear las encuestas para ayudar a develar las causas del autismo, y también prevén poder verificar la sospecha de que la condición se estaría volviendo más común en Estados Unidos.

Los sondeos de CDC, publicados el jueves en la edición semanal sobre muertes y enfermedades de la entidad, emplearon fuentes diversas, como escuelas, reportes médicos y otros datos.

Rice dijo que llevó años obtener las aprobaciones necesarias para acceder a la información.

Las tasas de autismo se mantuvieron bastante estables en los dos años en que se realizaron las encuestas, señaló la experta, excepto en West Virginia, donde la prevalencia aumentó mucho y se desconoce por qué.

Los estudios mostraron además que muchos menos niños autistas tenían retrasos mentales, en comparación con las estimaciones anteriores.

"Las viejas estadísticas siempre hablaban de que un 70 a 75 por ciento de los chicos con autismo tenían problemas cognitivos (...) Nosotros hallamos un 33 a 62 por ciento," añadió Rice.