Facilitated Communication (FC) enables non-verbal people on autism spectrum to communicate by typing

“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 Time Magazine 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.

The Role of Emotion in FC

Laulainen is featured in the video Happy To Know New Things, in which she says, “Emotional support is most important. Give a lot of support to an autistic person. I mean emotional support.” She adds, “I beg you. Think before you reject.”

The role of emotion is also important for Higashida, a Japanese teenager with autism who communicates through FC. Higashida discusses the importance of emotional support in the video I Write, So I Am Alive. About his mother, Higashida writes, “When she sits by me, I feel very calm, and it gets easier to control myself.”

People using FC may struggle at first, so both trainers and FC users say it is important to give positive emotional support, encouraging the FC user. Providing feedback on how the person is typing, and saying what he or she is typing can be especially helpful.

“Onerous to type, you must give me lots of emotional support if I am to keep on typing…Testing your status as my friend I begin to trust you. I need to trust to type,” says Chammi. “I am immature in my emotions. I must implore you to save me from myself. I am often in a rage. I need your loving support to get through it. Illogical guy like to live without rage. I need your support to do that.”

This is why even a hand on the shoulder can provide encouragement to the FC user. Anoja sometimes puts her fingers on Chammi’s leg while he types, offering verbal praise and also giving him the stability to help him feel his body.

Chammi and many other people with autism have shown the world that even people who were called severely retarded at a young age because of their lack of verbal communication are in fact intelligent, perceptive people who can live inspiring, productive, fulfilling lives.

According to the ICI, “It is especially important that difficulties with communication not be taken as evidence of intellectual incompetence. Although a person may be unable to demonstrate what she or he thinks and feels, or may have great difficulty being understood, she or he should not be further handicapped by the attitudes of others.”

Commentary

Medical Establishment Wrong Again

In 1994, the American Psychological Association (APA) wrote a “Resolution on Facilitated Communication” that effectively pronounced that FC should not be used as a communication technique. The 16-year old resolution says that diagnostic or treatment decisions should not be made based upon information a person has typed through FC. This essentially means if an FC user says he or she is sick, nothing should be done about it.

The APA’s poorly written missive and other anti-FC statements like it are among the most damaging false statements in the history of autism. (For what it’s worth, the APA’s definition of FC is listed toward the end, not the beginning of the resolution, and its definition is also incorrect. FC isn’t defined as support on the hand or arm; it could also be support just on the writer’s shoulder, back, or leg, for example, or even emotional support).

The mainstream medical and scientific establishment doesn’t like to admit when it is wrong, but history shows us that those who determine the direction of research as well as what are perceived to be acceptable interventions for autism are far from infallible.

Claiming that FC is not a valid communication technique, resulting in countless people with autism not being given the opportunity to communicate in the only way they might be able to, has caused untold damage to the disability rights movement.

Similarly harmful was the acceptance of the “refrigerator mother” theory. That was the theory that explained that autism was caused by the coldness of the mother, and it was recognized as truth as recently as 40 years ago.

There are other examples of the scientific establishment being wrong in the past – insisting there was no such thing as regressive autism, claiming children with autism could not get better, and saying autism was entirely genetic. All of these assertions turned out to be inaccurate, usually astonishingly so.

The people who don’t look into issues for themselves are the ones who base opinions on resolutions such as the one by the APA on FC. Autism is a complex disorder and generalizations often don’t apply.

“Hoping you make the judgment after you just see what it can do to help your child or student,” Chammi says.

Imagine the number of people who are condemned to lives of isolation simply because they cannot speak and have not yet learned an alternative communication technique. FC and other AAC systems provide some children and adults with autism with the only way they may be able to communicate, and communication is a fundamental right for all people. Chammi says learning to communicate was like “breaking free from prison.”

The TASH Resolution on the Right to Communicate states, “Where people lack an adequate communication system, they deserve to have others try with them to discover and secure an appropriate system. No person should have this right denied because they have been diagnosed as having a particular disability. Access to effective means of communication is a free speech issue.”

Some parents are reluctant to try FC or other forms of AAC because they are worried that relying on typing or AAC will impede the potential for speech development, but the opposite is true. FC has spurred speech development in some cases.

The AAC Connecting Young Kids (YAACK) website dispels some of the myths related to AAC: “Numerous studies have found that the introduction of AAC frequently has a positive affect on speech; children who are given AAC often develop speech faster than they would have otherwise (Bodine & Beukelman, 1991; Van Tatenhove, 1987).”  

Critics of FC point to studies in which authorship has not been demonstrated. However, those studies often have inflexible designs and fail to take into account the critical role of emotional support in FC. Many people with autism who use FC have clearly stated the difference emotional support makes.

People are not Robots

Scientists like to quantify autism. One example is measuring the size of the amygdala, the part of the brain that controls emotions. That people with autism have a hard time regulating their emotions is a fact well established by the medical community. Yet when it comes to taking that fact into consideration in studies, the role of emotion is ignored, even though people with autism have told us how critical it is. People with autism are still treated as if they are robots.

If FC users aren’t always able to replicate their typing abilities with different facilitators under varying conditions, skeptics claim that they were never able to do it in the first place. But if a student with autism is able to recite addition facts with one therapist and not another, and that is captured on videotape or documented, we don’t claim that he wasn’t able to do the task. Instead, we work with him with different teachers and under different conditions so that he can better generalize the work. We don’t say that he can’t do addition, nor do we say that the methods used to successfully teach him addition are invalid, and we certainly don't say that addition itself isn’t worthwhile.

If a student with autism cannot always perform what he or she knows academically in an unfamiliar testing setting in less than an hour among skeptical evaluators, we don’t discount the work the student has successfully done over years. FC is no different.

It is a well-known fact that people with autism have a hard time generalizing concepts learned, and often when a person with autism learns a new skill, he or she can do it best with a primary teacher. Why should FC be any different? The role of relationships is critically important in how children with autism learn.  

In Applied Behavior Analysis (ABA), long considered the gold standard in autism therapy, we allow and even expect teachers to use prompting and hand-over-hand instruction to teach skills to children with autism before fading prompts and enabling kids to master those skills. Why are different standards held for FC?

According to the ICI’s Best Practice in FC Training, “The fading of physical support should begin at the outset of the training process, with both facilitators and facilitated communication users working toward this goal.” There is a correct way to do FC, and it includes making sure to not lead the communicator to letters. If some facilitators don’t facilitate correctly, that shouldn’t condemn the entire technique, just as if some ABA therapists don’t teach according to accepted methods, that shouldn’t debunk ABA.

The education system has been slow in considering the important role of emotion in teaching people with autism, but gradually, behavioral approaches that have been overly reliant on robotic, data-based rote learning are being enhanced with naturalistic, developmental approaches, with the idea that emotion is the foundation of learning rather than just an add-on. 

Scientists and researchers also need to learn that children and adults with autism are not robots, and they need to take into consideration the intangible but critically important aspects of emotion. Measuring the size of the brain is fine, but no one can quantify the size of the heart. In order to understand autism, you have to understand that individuals with autism are people and not machines. Presuming competence is also a paradigm shift that needs to take place because when limits are set, potential is unfulfilled.

The late Dr. Stanley Greenspan understood this, and other researchers would do well to follow his lead. In his book Engaging Autism, Greenspan says, “The child may have a disorder or a set of problems, but he is not the disorder. He is a human being with real feelings, real desires, and real wishes.”

Clearly, there exists an extremely wide variety of capabilities of people with impaired communication skills and within autism itself. If the standard to be used in determining whether a technique is effective means that it must work for all people with autism, there will never be a "proven" successful technique.

FC Takes Time

According to the ICI website, “This method (FC) will not work for everyone but even for those for whom it is successful, it may take considerable time to achieve success, even weeks or months.” Dismissing the technique or the opportunity for someone to use it if success isn’t reached in a short period of time is ludicrous. To do so would prevent many people from reaching their goal of communicating.

At the April 2010 Interagency Autism Coordinating Committee (IACC) meeting in Washington, D.C., a presentation was given highlighting research on non-verbal children with autism. At the meeting, it was mentioned that using AAC devices is problematic because people “give up” because on the “first couple of days the child is not responding.” We don’t give up when teaching children with autism other skills; we shouldn’t give up when it comes to communication, one of the most basic human rights.

Neither the phrase “facilitated communication” nor “typing” was mentioned even once at the IACC, a group comprised of scientists, parent advocates, and two people with autism, but also a group that is heavy on bureaucrats, and lacks a representative of the autism community who communicates through AAC.  

The scene was a little bit like watching the Keystone Cops trying to solve a case.
It was as if they were saying, “If only we knew of a technique that non-verbal people could use to communicate – one that might spur speech development in many cases.”

The research they discussed was all focused on young children. Reasons given for why non-verbal children don’t speak included “cognitive,” “the lack of motivation, lack of understanding of intentional communication,” and “intellectual disability.” In other words, it was suggested that children with autism who don’t speak don’t have the intellect or the interest in speaking, among other reasons.

The IACC meeting was another case of the so-called experts talking about people with autism instead of asking those who have been through it about their experiences. Why not ask adults themselves who have been successful using FC their opinion? Here are four top ten lists of best practices for people to facilitate correctly, written by Bissonnette and Thresher as well as two facilitators.

Doing research on non-verbal children with autism while completely ignoring teens and adults who started out without communication but learned to type, and in some cases learned to speak, is like writing a history of the Super Bowl but ignoring everything that happened before the year 2000.

The Final Word

Is there any other disorder more misunderstood than autism? People with autism range widely in their skills and how they experience the world. Despite the fact that there is a great deal of heterogeneity among the population, and that there are multiple autism subtypes, research studies continue to treat people on the autism spectrum as if they are all the same.

FC proponents do not claim that FC will improve the problems of all people with autism. Because it may not work for all such individuals does not render it ineffective. Even if one assumes that FC only works in a minority of individuals with autism, or that for some autistic people, the technique only works marginally, does that mean that the technique is completely invalid and that nonverbal autistic people should not be given the opportunity to communicate?

FC has been virtually ignored by the mainstream medical and scientific community despite the spectacular successes of many people with autism who have used the technique to learn to communicate. Many of these people, initially assumed to be profoundly retarded, ultimately learned to type independently through FC. Some of the formerly non-verbal people who used FC began to talk, while others who had minimal speech greatly improved their verbal ability after using FC.

In his Wretches and Jabberers blog, Thresher tells people with autism who use FC to keep their heads held high even when they struggle:

"I would like to let everyone know that things do not always meet your expectations. The important thing is to keep plugging along. The world is a tough place and change comes slowly when we are dealing with discrimination that is so entrenched. There are those times when you may struggle and feel down. I know that feeling very well. I have had to push very hard to make change in my life. There have been many heartaches along the way. I have often thought things would remain terrible. The best advice I can give is to keep your chin up and tell everyone your story."

What should parents interested in FC for their children do?

“I would advise those interested in FC to seek out training, spend time with someone who uses the method, and connect with a network of families where FC is used,” says Chadwick. “Be open to the learning process. Be patient with yourselves and with the person who is beginning to use FC. Most of all, recognize and honor the intelligence that is there, waiting for expression.” 

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