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Chammi Rajapatirana is one of many FC users who can type independently. His mother Anoja looks on. Photo: Mike Frandsen

Mike Frandsen

October 9th, 2010 5:47 pm ET

“Thank you for inviting us today. I utterly happy to be here with you. I am a person with autism.”

Chammi Rajapatirana, a 36-year old writer, poet, and advocate with autism, typed those words independently during a presentation about Facilitated Communication (FC) in Sri Lanka in 2009. See the video here.

Facilitated Communication

FC is a supported typing technique used by people with autism and other disabilities who have absent or impaired speech. FC is defined by the Institute on Communication and Inclusion (ICI) at Syracuse University (formerly the FC Institute) as:

“A form of alternative and augmentative communication (AAC) in which people with disabilities and communication impairments express themselves by pointing (e.g. at pictures, letters, or objects) and, more commonly, by typing (e.g. in a keyboard). The method involves a communication partner who may provide emotional encouragement, communication supports (e.g., monitoring to make sure the person looks at the keyboard and checks for typographical errors) and a variety of physical supports, for example to slow and stabilize the person’s movement, to inhibit impulsive pointing, or to spur the person to initiate pointing; the facilitator should never move or lead the person.”

Support during FC can range from a facilitator’s hand on the FC user’s hand, to support on the FC user’s forearm, shoulder, or leg. The role of emotional support is also significant in FC, as is feedback by the facilitator, to let the FC user know the message is understood.

The goal of FC is for people to become independent or nearly independent in typing, with minimal support such as a hand on the shoulder, or for the FC user to develop an ability to speak some of the words as or after he or she types them.

FC is controversial because according to some studies, it is the facilitator and not the person with autism who is controlling movements and communicating. However, other studies have demonstrated authorship by FC users.  

Marilyn Chadwick, a Senior Consultant at the ICI and one of the country’s foremost experts on FC, says doubters should keep an open mind about FC.

“Skepticism is a healthy thing and often raises important questions about whatever is being observed. There are a number of people who have described themselves as initially skeptical of FC and now promote its practice,” says Chadwick.

“The key in healthy skepticism is an openness for the answer to be different from what you expect – that against all odds, what you are observing could be true. With that in mind, I would say to a skeptic, be open to the various kinds of evidence, because the answer may not be through the path of evidence that you are used to. Also do not deny a person a chance to communicate because you don’t understand or agree with what you are observing.”

FC is endorsed by autism advocacy organizations TASH (formerly known as the Association for Persons with Severe Disabilities) and the Autism National Committee.

However, because of the controversy, FC has not been widely adopted and it is not used in most schools.

“I think we do not fully know how much FC is used in this country. Because of the way it has developed, it has been hard to track,” Chadwick says. “But I would say that the number one reason people do not turn to FC more is that the intelligence of those who cannot speak and who have serious sensory-motor issues is still not recognized. We continue to judge them as limited and view their life outcome as bleak.”

FC has been a godsend for many people with autism who were formerly considered unintelligent, and even retarded, and later proved to be not only keenly aware of what is going on, but also smart, articulate, and eloquent in their communication. Many FC users have learned to type independently after first having physical support.

Candidates for FC include those who can understand language but have little or no functional speech and have problems in movement, motor, or sensory skills. Physical support is sometimes used to provide resistance on the arm to help control tremor or impulsivity, or to compensate for hand-eye coordination difficulties.

Chammi types on a Lightwriter, an electronic device that displays text and speaks the words as he types them. He also types on a laptop, an IPad, and a laminated letter board that is configured with letters in the same order of a standard keyboard, with additional phrases around the perimeter. A variety of additional assistive technology devices are available for supported typing.

On Being Mute

“Being mute is like having your brain gouged out,” Chammi says in On Being Mute, an essay he wrote that is posted on the ICI website. “Autism/apraxia took away my voice, and a world that equates muteness with stupidity took everything else. Yes it really is as if my brain were gouged out. It hurts so much I want to scream.”

Chammi notes in the essay that we live in a world in which people who cannot speak are assumed to be unintelligent. At first glance, to many people, it doesn’t seem that a person who has little or no verbal ability would be intelligent and able to communicate effectively. Chammi and many other FC users have proven the opposite to be true.

Chammi’s intelligence is not in doubt. He has played a form of the game Boggle against this reporter approximately 50 times, winning more than two-thirds of them. The board, which changes for each game, has several columns and rows of letters, and the object is to create words in any direction by pointing at consecutive letters.

Breaking Free

Chammi’s family was told when he was a boy that there was no hope for him, and that he was profoundly retarded. It wasn’t until the age of 17 that he first learned to type with support.

In “Breaking Free from a Silent Abyss,” Smriti Daniel of the Sunday Times in Sri Lanka wrote about the moment Chammi’s family found out that he could communiciate:

“Another momentous event was the making of a video to send back home to the family. “Here’s your chance to talk to your family, say what you’ve always wanted to say,” Anoja (Chammi’s mother) told him. He did. His aunts, uncles and cousins, (gathered together in Sri Lanka to watch the video) watched in amazement as Chandima typed: “I want to say I love you.” Anoja wasn’t home when they called, but Chandima’s keen ears picked up the sound of the answering machine as it took the message in another room. Rushing to stand beside it, unable to pick up the phone and talk, he listened to his family’s outpouring of joy. “They were shouting and laughing and crying…that was such a wonderful tape. My brother’s voice could be heard the loudest, ‘cheers for the mother, cheers for the mother,’” remembers Anoja smiling.”

In 2003, Chammi and Anoja moved from Maryland to Syracuse so Chammi could become a more proficient FC user and trainer, and undergo speech therapy at the ICI. The ICI is the leading organization nationally in conducting research, training, and education on FC and AAC. The ICI also advocates for inclusive schooling and community living. While in Syracuse, Chammi also took courses at Le Moyne College.

Movement Problems

Despite the speech therapy, Chammi’s apraxia has prevented him from developing speech other than a few isolated words. Apraxia is a neurological and movement disorder that affects the ability to speak and execute motor skills. Still, Chammi practices oral motor exercises in the hope of someday speaking.

Adding to problems in speech, people with movement disorders may mistakenly be viewed as unable to comprehend requests, when in fact the desire to perform an action is there but the body will not always follow. Many people with autism are wrongly believed to have lower cognitive skills than they actually possess, but physical problems may prevent them from expressing their level of understanding.

“Helplessly I sit while Mom calls me to come,” Chammi said in “Inside the Autistic Mind,” a TimeMagazine article by Claudia Wallis in 2006. “I know what I must do, but often I can’t get up until she says, ‘Stand up,'” he writes. “[The] knack of knowing where my body is does not come easy for me. Interestingly I do not know if I am sitting or standing. I am not aware of my body unless it is touching something … Your hand on mine lets me know where my hand is. Jarring my legs by walking tells me I am alive.”

Many people with autism report feeling “stuck” within their bodies, and not able to feel their limbs in order to comply with requests. At some point there is a disconnect between the signals that originate in the brain and end in the hands, arms and legs.

EASE: Educate, Advocate, Support, Empower

In 2006, after more than 30 years in the U.S., Chammi and his parents moved to Sri Lanka to start the Educate, Advocate, Support, Empower (EASE) Foundation devoted to providing FC and AAC training for people with speech impairments. The Rajapatiranas started a small learning center that students with disabilities attend for free. Students are first taught to point to objects with the goal of eventually typing without physical support. Chammi’s mother Anoja modified the Sinhala alphabet to create a letter board to enable her students to communicate.

“We’re just trying to help people to make stimulating, productive lives for themselves, says Anoja.

Chammi adds, “By giving the children an alternative communication system, we help them interact with the world and we change not only their lives but the lives of the families as well.”

Chammi has given many presentations over the years to educate people about FC, typing answers to questions posed by the audience. Chammi still gets nervous and recognizes that his emotions go up and down. Chammi and Anoja met with a group of parents of new FC users in Bowie, Maryland, Thursday.

Chammi typed independently, breaking the ice by asking the attendees to introduce themselves. He later joked that his mother was such a good FC trainer because he trained her.

Excerpts from Chammi’s presentation at the 2010 FC Symposium in Whittier, California in July are below. (Sometimes Chammi refers to himself as “Guy.”)

“Guy hoping to change the way autism is viewed and experienced in the world, especially in Sri Lanka.

Tasting my great joy in my work heals my hurting heart in the end.

I and my brethren carried the twin messages of “assume competence” and “find a means of communication for people with impaired speech” all over the US.

I who was considered profoundly retarded became a college student ceased to be retarded! Believe it or not I was never retarded.

Drinking up intense FC training my Mom and I got ready for our next step; moving back to Sri Lanka to introduce FC to non-verbal people there.”

Other Success Stories

Here We Are World is a brief documentary from the ICI that features people from around the U.S. who type to communicate. The video was taken at the 2008 FC Symposium in Whittier.

Some formerly non-verbal children and adults with autism have even learned to speak the words as they type them after using FC. One of those people is Jamie Burke, a senior at Syracuse University.

Burke could not speak until he started using FC. Once he heard the words that his electronic device spoke after he typed them, he started speaking. In the documentary Inside the Edge: A Journey to Using Speech Through Typing, Burke says, “When I began my typing, seeing and hearing the words together helped me to begin to speak. Now that I am using my speech it feels like freedom from autism.”

Sue Rubin is another person with autism who learned to communicate through FC and eventually became skilled at typing independently. She earned a 3.98 G.P.A. in high school and attends Whittier College in California. Rubin was the writer and subject of the Academy Award nominated documentary Autism is a World, which appeared on CNN in 2005.

Autism and the Myth of the Person Alone

Burke and Rubin, with Richard Attfield, Larry Bissonnette, Lucy Blackman, Alberto Frugone, and Tito Rajarshi Mukhopadhyay, co-wrote Autism and the Myth of the Person Alone with Douglas Biklen in 2005. Biklen is the dean of the School of Education at Syracuse University. The book describes first-hand accounts by and interviews with people with autism who communicate by typing.

Biklen writes, “In light of the controversy, this book includes individuals who can type without physical support or who can speak the words they type, before and as they type them and after they have typed them.”

Other quotes from the book include the following:

Sue Rubin: ”People stare and marvel at my irregular behaviors which lead to poor assumptions that I am simply mentally disabled with little or no intellectual functioning. My appearance is very deceptive, and day after day I am working, as an advocate for all autistic individuals, to let the world know that we are intelligent and witty, and should not be judged for our quirky behaviors because they are only a minute reflection of our true abilities.”

“Being looked upon as feebleminded is something I have been forced to endure my entire life. What an extremely difficult hole to have to climb out of, to fight for your own intelligence and capabilities.”

Tito Rajarshi Mukhopadhyay: “It was a terrible thing to hear from a doctor in Calcutta that I was mentally retarded. And thank God that mother did not believe it.”

“Yes, some areas remain less developed because of lack of associating the mind with body and environment. That does not prove that the mind is incapable of thinking…The proof of my retardation was that I could not follow basic commands. I was not able to apply my knowledge although I could understand perfectly well what was being asked.”

Alberto Frugone: “I hesitated on doing things because, not knowing their purpose, clumsy as I am, my actions ended up in the wrong way and I was afraid of being considered stupid…Today I would say I experience the same fear if I’m insecure when I type to communicate and I feel a lack of tolerance from the others who might mistake me for stupid.”

Richard Attfield: “An Educational Psychologist arrived at our home. He was a huge, insensitive man…he courageously announced I was severely mentally retarded…Angry with him, I took every book in the room and threw them in his direction. I do not think he took the hint that they were my books and I understood the words in them. Despite the efforts of my parents, I was denied entry into mainstream education on the grounds of my disability…As I see it, I was not given a fair chance.”

“When I failed at set tasks or refused to do them I was then damned as not having the ability. Some of the staff did not seem to comprehend that being unable to vocalize one’s thoughts is not the same as not having any.”

“That first day I typed it was a new beginning. No words can describe what it felt like to be able to converse with my mother.”

Jamie Burke: “I understand why kids scream. It’s frustrating not being able to speak and feeling as a mostly invisible being.”

Wretches and Jabberers

Bissonnette and another FC user, Tracy Thresher, star in an upcoming documentary, Wretches & Jabberers: And Stories from the Road, directed by Oscar winner and twice Academy Award-nominated filmmaker Gerardine Wurzburg, who also directed Autism is a World. Both Bisonnette and Thresher can speak the words that they type.

During their globetrotting tour, Bissonnette and Thresher visited Chammi in Sri Lanka, Naoki Higashida in Japan, and Antti Lappalainen and Henna Laulainen in Finland, who all communicate through typing (watch the movie trailer here).

“Being mute is a fate I would not wish on my enemies…being able to hold a conversation with another human is what makes life worth living,” says Chammi on www.easesrilanka.org.  

Chammi and many other people with autism have learned to type independently with no physical support, after first learning to type through FC. Chammi didn’t start typing until he was a teenager. Thresher learned to type in his 20s. Bissonnette started typing in his 30s. For large parts of their lives they were considered by the system to be retarded. Educators, therapists and support workers often talked about them instead of to them, a common mistake, and people treated them as if they couldn’t understand what was being said. Now they serve as examples of what people with little or no verbal skills can accomplish through FC.

Read in Full:  http://www.examiner.com/dc-in-national/facilitated-communication-fc-enables-non-verbal-people-on-autism-spectrum-to-communicate-by-typing

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