Visit Your Local PBS Station PBS Home PBS Home Programs A-Z TV Schedules Watch Video Donate Shop PBS Search PBS

TRANSCRIPTS

Prisoners of Silence

[The following program contains explicit language. Viewer discretion is advised.]

Original Air Date: October 19, 1993
Written, Produced and Directed by Jon Palfreman

 

ANNOUNCER: These children cannot speak. No one knows what's going on inside their heads. They're autistic. Tonight on FRONTLINE, the explosive story of a revolutionary method of communication.

Dr. DOUGLAS BIKLEN, Director, Facilitated Communication Institute, Syracuse University: Here was a means of expression for people who lacked expression and here was a way that you could find out what people were feeling and what they were thinking.

ANNOUNCER: FRONTLINE investigates facilitated communication--the theory, the practice and the controversy.

PHIL WORDEN: God, it's really true. This stuff is bogus. You know, it's just so clear and so unmistakable as I was sitting there watching this.

ANNOUNCER: Tonight on FRONTLINE, "Prisoners of Silence."

CHILDREN: [singing] If you're happy and you know it, clap your hands / If you're happy and you know it, clap your hands / If you're happy and you know it--

NARRATOR: Every American child knows this song. They can feel happy and they know what it is like to feel happy. But to children growing up with the strange condition of autism, like these at the Boston Higashi School, the words may not mean much at all. Something has gone wrong with their developing brains. The children have a faraway look. Generally they shun human contact.

The mysterious condition of autism affects close to 400,000 Americans. Most have little or no speech. Eighty percent are mentally retarded. While the condition can be treated, there's no cure.

Until three years ago, this was the generally accepted theory of autism. But then a radical and controversial new technique called "facilitated communication" took America by storm. Today, thanks to facilitated communication, Jeff Powell, once written off as profoundly retarded, sits in class doing algebra.

Profoundly autistic Ben Lehr can't speak, but can type his thoughts to an audience of people.

Dr. DOUGLAS BIKLEN, Director, Facilitated Communication Institute, Syracuse University: [reading Ben Lehr's words] "Feel like you need patient friends like Michael. They fight for me."

NARRATOR: Professor Douglas Biklen of Syracuse University thinks it is the most important breakthrough in autism ever and is promoting it enthusiastically. The theory of facilitated communication claims that many, perhaps most autistic people, are not retarded, but have intelligent minds imprisoned in bad bodies.

FACILITATOR: Are, either, for-- good. Go ahead. Delete. Did you want to delete that?

NARRATOR: Biklen argues that autistic individuals like Ellen have many things to say but are unable to say them because her body will not do what her mind wants. But with a little help, or facilitation -- holding her hand, wrist or elbow -- her body's often jerky movements can be smoothed out, allowing her to type letters on a keyboard.

FACILITATOR: --TALK-- I, N, G--

NARRATOR: When Douglas Biklen discovered the method during a visit to Melbourne, Australia, he realized that everything known about autism might be wrong.

Dr. BIKLEN: I knew that I had seen something terribly important. Here was a means of expression for people who lacked expression and here was a way that you could find out what people were feeling and what they were thinking. And, you know, these were people who had a disability the very definition of which suggested that the people might not have feelings and certainly no ability to empathize with other people's feelings. This was a disability the very definition of which was that people lacked imaginative ability. Well, I mean, you know, how do you do higher order mathematics without an imagination? How do you write poetry without an imagination? So it was quite clear that this was a means of expression that was revolutionary.

NARRATOR: The O.D. Heck Center for the Developmentally Disabled in Schenectady, New York, runs a large autism program. Before facilitated communication, the staff never imagined that any of their nonverbal clients might be of normal intelligence. But then speech pathologist Marian Pitsas heard about the new technique being promoted at Syracuse University. Together with her colleague Jimmy Maruska, she went to find out how it worked.

MARIAN PITSAS, Speech Pathologist Facilitator, O.D. Heck Study: Three of us went for the training first and we rapidly trained everyone in our program, all three shifts, and had many, many clients typing at varying levels and with varying degrees of success but it spread very, very quickly.

I thought it was wonderful. At last we were going to-- we were going to help these people communicate. We would find out what they really understood.

JIMMY MARUSKA, Facilitator, O.D. Heck Study: Before, they were just another person that I was helping with and teaching them some basic skills to help them survive out there, but then here along comes a person that can share their thoughts, that can talk to me. I can talk to them. We can have a conversation that's relevant. It was great. It was really super. I mean, you couldn't ask for anything more. All of a sudden, these people that we always treated as low-functioning were right up there with us.

NARRATOR: Ray Paglieri, the director of the autism program, realized the enormous implications of the typed messages his clients were now producing.

RAY PAGLIERI, Director, Autism Program, O.D. Heck Center: I was thinking that certainly a large number, if not all of the folks that we were working with may, in fact, have normal intelligence. I mean, we had people typing sentences, paragraphs, alike. We were thinking here we were going to redefine the whole notion of what autism is all about. We trained the rest of our staff, okay? We literally were encouraging people to work with everybody in the program. We were training as many people as we could, training people out in the community. I mean, we were excited. We looked at it as literally a breakthrough technique.

NARRATOR: So did the media.

ANNOUNCER: [January 25, 1992] PrimeTime. Now, from New York, Diane Sawyer.

DIANE SAWYER, ABC News: And now a story about hope. For decades, autism has been a dark mystery, a disorder that seems to turn children in on themselves, against the world. Tonight, however, you are going to see something that has changed that. Call it a miracle. Call it an awakening.

NARRATOR: Word of the new miracle of facilitated communication spread rapidly. Parents told teachers and teachers told parents. Many schools embraced it. At Edward Smith Elementary School in Syracuse, children previously thought to be retarded now sat in classes with their peers, receiving age-appropriate instruction, studying math, studying biology.

Dr. BIKLEN: Maybe you can say what you want to point to.

NARRATOR: A large group of individuals had, in Biklen's view, been greatly underestimated simply because they could not speak or control their bodies.

Dr. BIKLEN: Why don't you show us and then you try to say it. That's good.

I had always believed that it was important to treat people as competent, even though they didn't give off the signs of it. To me, that was just the-- the humane thing to do. That was the sensitive thing to do. The wonderful thing about facilitated communication is that once a person begins to communicate, you can ask the person, "What's going on here?"

NARRATOR: The words that emerged from the electronic communicators and letter boards spoke of loneliness, of being trapped in a prison of silence, of slavery and of freedom.

("Autism held me hostage for seventeen years but not any more because now I can talk.") For Biklen, a simple technique had redefined an entire group of disabled people. Jeff Powell, for example, is no longer seen by his teachers and peers as mentally retarded. He has become a celebrity at Baker High School in Syracuse. They stress he's an academically gifted student who writes poetry for the school yearbook.

But some people had their doubts about facilitated communication. Dr. Howard Shane has devoted his life to helping disabled nonverbal people to communicate. At Boston Children's Hospital, he runs a center which finds technological solutions enabling disabled people like Tony Bonfiglio who has cerebral palsy, to communicate independently.

Dr. HOWARD SHANE Director, Communication Enhancement Center, Boston Children's Hospital: We have this saying in our center that no person is too physically disabled to be unable to communicate. The slightest movement, winking of an eye, moving of an eyebrow, sipping and puffing on a switch-- on--on a straw would control a switch-- finding that subtle movement is all you need to be able to control the technology.

VOICE SYNTHESIZER: Yes, I have made many good friends.

NARRATOR: Thanks to computers, thousands of nonverbal people can express themselves independently. With such equipment available, Shane questioned, why should autistic people need another person to hold their hands?

Biklen says autism is special.

Dr. BIKLEN: Last week, I had conversations with several people. One person said, "It slows me down. It helps me by slowing me down. When I'm not slowed down, I get garbage. I get unwanted words. I get a lot of letters strung together that don't make a word. When I'm slowed down, I can type what I want."

NARRATOR: But critics like Shane were amazed at the sophisticated output. Autistic children of 5 and 6 produced perfectly spelled sentences. ["I cry a lot about my disability ... It makes me feel bad when I can't do my work by myself." Andrew, age 6] Where had they learned to read and write? [Please heed my need. I need to heed others. I this reason think the world they need heed like we heed brothers." Manny, 2nd grade]

A difficult question had to be faced. Was the typing coming from the autistic individual or from the facilitator? ["Am I a slave or am I free ... Am I trapped or can I be seen ... As an easy and rational spirit ... Am I in hell or am I in heaven."]

Dr. SHANE: The outcomes that were being reported were just so far out of line with what anyone had ever found. They're communicating in grammatically complete sentences. They're marking the tense correctly. Their spelling is accurate. They have insights that go far beyond their years.

Dr. BIKLEN: [reading] "Understanding is so hard. I long to see it real. I just hope, really hope, it's not a lost ideal.

As I said, many of the accounts coming from people with-- who are using facilitated communication as their means of expression have to do with loneliness.

I think it's rather obvious that the way in which these children learned to read was the way that most of us learned to read-- that is, by being immersed in a language-rich environment. You go into good pre-school classrooms and you'll see words everywhere, labeling objects, labeling pictures. You look at Sesame Street. We're introducing words. We're giving people whole words. We're also introducing them to the alphabet. On the other hand, having said that, it does seem to me that there's something unusual going on here when you see a number of children with autism who seem to have precocious ability. That is, they know a lot of words and very often, you know, quite long words. You know, how is this? Is there something about the disability that allows them to focus in on language and to be able to put together words? ["I greatly fear for the ruin of the Earth unless humans jointly find a cure."]

NARRATOR: A very small number of autistic people, "savants," have spectacular abilities in narrow areas.

EXPERIMENTER: The 17th of December, 1974.

SAVANT: That was a-- a Tuesday.

EXPERIMENTER: The 10th of June, 1917.

SAVANT: It-- it was a-- a Sunday.

EXPERIMENTER: The 1st of March, 2044.

SAVANT: It-- it will be a Tuesday.

NARRATOR: Noel only needs to hear a tune once and he's able to play it.

TEACHER: Try it. Try it now.

NARRATOR: If such astonishing abilities existed for music and math, why not for literacy, as well?

To parents and professionals, facilitated communication had given hope where there was none. They flocked to Syracuse by the thousand to learn from Douglas Biklen and his staff at the newly-founded Facilitated Communication Institute.

Dr. BIKLEN: Welcome to the 1993 conference on facilitated communication in Syracuse, sponsored by the Facilitated Communication Institute at Syracuse University.

NARRATOR: Many parents had longed to know what their silent autistic children were thinking, had longed to have conversations with them. Facilitated communication appeared to be a dream come true.

JAN KOCHMEISTER: She had been tested in the past and they said she had an I.Q. under 10 and I believed it was a little higher than that, but not much higher. And when I heard about facilitated communication, I said, "Granted it might work with some people, but I doubt that, and I'm sure it won't work with her." It was a college student who started it with her and I watched her twice and I couldn't believe what I was seeing. Since then, Sharisa's typed 120 poems, 9 short stories. She talks about everything she feels.

KATHY HAYDUKE: This past year, in October, '92, a wonderful person came into her life who had gone through Doug Biklen's program here at Syracuse University and she believed in facilitated communication and she said, "Do you know Stacy can write?" And I just-- I-- I cried. I couldn't believe it. I said, "No, no. You're wrong. This is my kid. She's learned six signs her whole life. This can't be true." But she kept-- she kept at it and she said, "Kathy, she's telling me this and she's telling me that and you've got to see it." So one day she came over to the house and she said, "Stacy, I know you're excited. After all these years, you must have something you want to tell Mom." And she said-- and Stacy types out, "I love you, Mom."

NARRATOR: Speech pathologists, social workers and teachers felt just as passionately that F/C had changed everything.

COLLEEN DELLES, Teacher: It's changed the theory of autism alone, and that's pretty significant because what we've known as autism is almost completely different. It's almost like the label or term itself needs to be redefined because there are certain words that are under "autism" under the DSM III -- there's this, this, this and this -- while we find that once we open this world for the kids, they are social now. They are appropriate. They do have language. They do understand.

NARRATOR: And, advocates claimed, F/C didn't just work for autism, but for Down Syndrome and other forms of mental retardation, as well. By 1993, thousands of parents, teachers, speech pathologists and care workers had been trained as facilitators, the foot soldiers in a new social movement.

But some families had their doubts about the new miracle technique, like the Gherardi's from Pike, New Hampshire, whose 17-year-old son, Matt, is autistic.

CATHY GHERARDI: It was about two years ago when someone mentioned that Dr. Biklen was giving some seminars on this facilitated communication. The speech and language teacher at Matthew's school was there and she just couldn't wait to get back and start with Matthew.

NARRATOR: Matt, who could then only recognize about 50 words, went to school and his teachers began using F/C in the classroom. Almost overnight, his academic work improved dramatically. Cathy Gherardi became suspicious of his new academic achievements.

Mrs. GHERARDI: He was taking all kinds of Shakespeare literature, Romeo and Juliet, and he was in algebra class, although he didn't fare that well in algebra, but English, diagramming sentences-- the work that he was coming home with was absolutely incredible. Incredible. I mean, getting A's in some of these classes that I know I would have a hard time getting A's in.

NARRATOR: What seemed especially odd was that Matt wouldn't facilitate with his mother.

Mrs. GHERARDI: At that point, I was frantically trying to communicate with him at home. You know, I'm saying, "Gosh, if he's talking to these people, why isn't he talking to his mom? You know, he and I have been best friends, bosom buddies. I mean, I'm his life and he's mine. You know, surely we can be able to communicate," and absolutely got nothing. As a matter of fact, he would take his board and bring it and put it in his bag and put it in his closet and say, "Finished."

NARRATOR: While the Gherardis got on with their life, reconciled that F/C didn't work, at least for them, Matthew's school continued using it enthusiastically.

One day at school, Matthew and his facilitator, special education teacher Susan Rand, had a conversation, but it wasn't about Shakespeare. ["dad herts me .. (what happens) his balls next to mine make me feel very horny"] Later that day, Susan Rand wrote down the conversation and reported it to the authorities. ["(when was the last time this happened) Thursday. Dad give love to my ass and dad give love to my c--k with his mouth. (what happens next) the bastard eats c--k in mouth then kneel over and-- you know. "]

Mrs. GHERARDI: She handed me a piece of paper -- actually, two pieces of paper -- and said, "These are the things that he said." And I just scanned through the paper and I was just in shock at some of the language that was on the paper. And I said, "It's impossible. It's absolutely impossible." And it was at that point she made it very clear to me that this was real. It was real, that they had a warrant for my husband's arrest and they were going to send Matthew to the hospital for an exam. They were telling me that Matthew may have to go to a home and-- a foster home. And I told them, I said, "There's no way he's going to go to a foster home." I said, "He hasn't been anywhere else except our home. There's no way he's going to go to a foster home." And I was told that I may have no choice in the matter, there may be no choice. And it was at that point that I realized I had no control.

NARRATOR: Gerry Gherardi a pharmacist at the veterans' hospital, was working late that day and knew nothing of this until he arrived home.

GERRY GHERARDI: I got home about 9:30. I pulled into my driveway and Cathy came rushing down the driveway and started to talk to me. She immediately told me not to go into the house, that there was a warrant out for my arrest, that allegations were made that I had sexually abused Matthew and I was not allowed near Matthew, nor was I allowed to go into the house.

NARRATOR: Forced out of his home, Gerry Gherardi spent the next six months living at a friend's house, his family life destroyed because of the letters on the board. Despite the fact that there was no other evidence of abuse, the school, the social services and the police all believed that the words had come from Matthew, yet Gerry Gherardi protested complete innocence.

Mr. GHERARDI: I told Cathy, "There's got to be something wrong. It has to be happening someplace else. We have to call up the Autism Society in Washington and find out if they had any literature on facilitated communication and allegations of sexual abuse." When she called them up, they immediately sent us materials and in these materials it showed that it was happening all over the country.

NARRATOR: There were cases in California, in Texas, in Georgia, in Indiana, in Oklahoma, in New York. ["I hate my dad."] The accused included parents, teachers, care workers. ["--fuks me witha dilldo"--] Some, like Gerry Gherardi, had been forced to leave home. Some ended up in jail. Some parents had their children taken away. ["One afternoon the police arrived at my house to inform me that my daughter had [said through F/C] that she had been molested by my husband. They put her in foster care. Of course I couldn't know where because we were now a threat to her. I was frantic with worry. During her stay in foster care, she lost 10 pounds and suffered two black eyes. She had a severe ear infection which finally burst. Does it make sense that she never communicated to anyone [through F/C] that she was in pain ?"]

This is what happened last January to a family in southern Maine. Betsy Wheaton, a 17-year-old autistic girl, began using F/C at school in 1992. One day, using a letter board, Betsy and her facilitator wrote that everybody in her family -- her father, mother, grandparents and brother -- were sexually abusing her. ["He f--ks me and and hhe f--ks me and he makes me hold his penissss."] Betsy and her brother were immediately put in foster care while the case was investigated.

The court appointed a local attorney, Phil Worden, as Betsy's legal guardian. Worden realized that this was more difficult than the usual abuse case. Before considering whether the allegations were true, the court had to decide a more fundamental question: was Betsy the author of the allegations or had they come from her facilitator? ["It looks like ... a ... a slimy and ... white. I'm afraid. I am afraid. My father and my moth ..."]

PHIL WORDEN: I was most worried in my heart about were we going to do justice in this case? If the communications were real and she was being abused, the idea that on a legal technicality we might send the children back would be just absolutely horrible. On the other hand, if these were not real communications, the idea that all this would happen to this family and these children on a bogus idea was also unacceptable. So to my mind, the stakes were extremely high on both sides and it was very important that we reach a quality decision based on the truth. And so I-- you know, what I was looking for was a clean, simple and fairly quick way to just solve that one narrow question: Were these communications coming from the children?

NARRATOR: All the parties agreed to invite an expert in communication to come and assess Betsy. They chose Dr. Howard Shane from the Boston Children's Hospital. Shane had devised a double-blind test, like this, to objectively determine who was authoring the messages, Betsy or the facilitator who transcribed the allegations. He showed both a series of pictures and asked them to type what they saw. When both Betsy and her facilitator saw a picture of a key, the letters K-E-Y were typed. But Shane wanted to discover what happened if each saw a different picture. When Betsy saw a cup, she didn't type "cup," she typed "hat," what the facilitator saw.

Dr. SHANE: Here we go. Now take a look at this one. I want you to tell me what you see, okay?

NARRATOR: When Betsy was shown a picture of a dog, she didn't type "dog," but "sneakers," what the facilitator saw.

Dr. SHANE: Okay. Want to take a look at that one?

NARRATOR: When Betsy was shown a boat, she didn't type "boat," but "sandwich," what the facilitator saw.

Dr. SHANE: Okay, here's the next one.

Mr. WORDEN: It was just devastating to watch because what you saw was that words being typed out were the words the facilitator had seen. And, you know, it was just-- it was just so clear and so unmistakable. I was sitting there watching this and saying, "My God, it's really true. This stuff is bogus."

Dr. SHANE: What I found was that whenever the pictures were different, I always received the typed message that was seen by the facilitator, so that was pretty strong evidence that not only was Betsy not communicating, but the messages were being absolutely, totally directed and authored by the facilitator.

NARRATOR: Shane then tried a message-passing test. He took Betsy out into the corridor and showed her an object out of sight of her facilitator.

Dr. SHANE: Betsy, now I'm going to show you something. Take a look at this. You take this. Now, what is that? Give it back to me. We're going back in. I want you to tell everybody what I showed you.

When we went back into the room, she was unable to type the word "key." I then took another key out of my pocket and said, with the facilitator present, "What is this?" and she immediately typed, "key." So again it suggests that when the facilitator is aware of the information, we get the answer, but when the facilitator is unaware of the information, we don't get an answer.

NARRATOR: The only logical conclusion of the test was that the terrible accusations had been authored not by Betsy, but by her facilitator. The Wheatons are now reunited. The facilitator, devastated by the test results, stopped using facilitated communication and persuaded Betsy's school to stop using it, as well.

After using F/C for over a year, the O.D. Heck Center in Schenectady began discussing whether they should do their own test of facilitated communication.

Ms. PITSAS: My first reaction was, "Why would we ever want to test it? It's working." We-- there were things that people-- that individuals who typed with me typed that I didn't remember consciously being aware of, so I thought, "Well, that's proof enough. Why should we need to test these people? It's their communication."

But just in thinking about it, I-- then I wanted the research to be done because I thought it would prove once and for all, without a doubt, that it was these people communicating and that we were not influencing them in any way, shape or form. I was convinced that it would prove their communication.

NARRATOR: A team of psychologists and facilitators led by Doug Wheeler devised a rigorous double-blind test.

DOUG WHEELER, Psychologist, O.D. Heck Center: Well, this is what we had in mind. It's just a simple T device. The table's split down the middle. Myself, as the researcher, I can stand back here and I'm pretty much out of view of the--

NARRATOR: The facilitator and autistic individual sat side by side, with a screen dividing their visual field. Sometimes they were shown the same picture, sometimes different ones. They tested 12 clients facilitating with 9 staff members, many who were trained in Syracuse. They ran dozens of trials. The results were shocking.

Mr. PAGLIERI: We literally really didn't get one correct response. I mean, it was unbelievable, really, given-- given, you know, our prior belief systems about the whole thing.

Mr. WHEELER: We had-- we ran 180 trials. There were 180 trials where valid communication could have been demonstrated and none-- none did. We had overwhelming evidence for facilitator control. That was the main finding. And it began to dawn on us that the impact on the facilitators was going to be traumatic. Their belief had grown to such an extent and was continuing to grow at that point where it really had become an essential part of their belief system, an essential part of their personality, and people would use phrases like, "F/C is my whole life." "F/C is my life." These people were dedicated. They spent their own money doing training. They spent their own money to buy communicators. The dedication was phenomenal. And we-- and we had evidence that these people were all controlling the typing and we were-- we knew it was unconscious. We knew these people had no idea they were controlling it. That was clear. So, yeah, we began to be very concerned.

Ms. PITSAS It was devastating to see the data just there in black and white in front of you. It was mind-boggling. There was no arguing it. It was clear-cut. To see the look on Doug's face, seated across the table from me, someone who I work with, whose opinion I trust, whose work I trust-- I knew you couldn't argue-- I couldn't argue with those results. It was-- it was devastating to look at it and see it there in black and white in front of me.

Mr. MARUSKA: It's like taking your best friend and going out and they're getting hit by a car and they're dead. It had the same effect. It's just like going through the death process. I mean, all of a sudden, you're slapped with this thing. It's not there. It's a belief. It's something that's ingrained in me. I believe this. This is-- I-- I centered a lot of things around this and now, all of a sudden, "No, it's not."

NARRATOR: Life at O.D. Heck returned to the way it had been before facilitated communication. The clients learned the life skills they would need to survive outside. No longer were they expected to express their thoughts and wishes in complex sentences.

Ms. PITSAS: It was like something had been taken away very, very suddenly and I didn't know what to replace it with. It took-- it took me, I think, months before I could talk about it with some people without breaking down in tears.

NARRATOR: A copy of the O.D. Heck report was sent to Douglas Biklen in Syracuse.

Dr. BIKLEN: I think that test has severe problems. I mean, one, you're putting people in what might be described as a confrontational situation. That is, they're being asked to prove themselves. As I pointed out, confidence appears to be a critical element in the method. If people are anxious, they may, in fact, freeze up in their ability to respond. They may lose confidence. They may feel inadequate.

Mr. PAGLIERI: If there was a bias, it was a bias in terms of proving that it was real. I mean, we selected cards that people experienced in their everyday lessons. We ensured that the individuals participating were paired with the facilitators they had the most success with. We tried to make the setting as natural as it could be. We encouraged people to bring the reinforcers that they use in their normal, everyday lives, turned total control over, in terms of saying to the 3 facilitators, if the person wasn't comfortable that day, they could stop it whenever they wanted to.

NARRATOR: More studies came out.

1st STUDY: The results of this case study demonstrate quite clearly that the subject was not able to communicate using the facilitated communication techniques. [Hudson, et al., "Journal of Autism & Developmental Disorders," March 1993.]

2nd STUDY: No client showed unexpected literacy or communicative abilities when tested via the facilitator screening procedure, even after 20 hours of training. [Eberlin, et al, "Journal of Autism & Developmental Disorders," September, 1993.]

3rd STUDY: Considerable evidence was found of the facilitators influencing the attempts at communication. [Moore, et al, "Journal of Autism & Developmental Disorders," September, 1993.]

4th STUDY: None of the 23 participants demonstrated authorship. There has been no instance in which a participant has successfully identified an object through F/C. [Szempruch/Jacobson, "Research on Developmental Disabilities," July/August, 1993.]

5th STUDY: These results suggest that the communications previously reported from individuals with autism may have been influenced by facilitator co-activity. [Smith/Belcher, "Journal of Autism & Developmental Disorders," March 1993.]

NARRATOR: F/C had claimed to unlock expressive literacy in nonverbal autistic individuals. Under controlled scientific conditions, that literacy vanished. To date, over a dozen studies, involving hundreds of children and researchers in three different countries, have reported negative findings.

But Biklen remains unconvinced.

Dr. BIKLEN: A number of these studies have asked people to name objects or name pictures. It turns out that, for people with autism and some other developmental disabilities, a number of people experienced very severe word-finding problems such that you ask people to label an object and they can't do it. They may be able to describe the object, even state what it's for but, quite typically, they, in fact, come out with a different name of a different object.

NARRATOR: But, researchers asked, was it possible that a child who can write poetry and do algebra would be unable to label a cup? ["I want people to understand. I know its hard to do. I think they can if they try understand won't you?"] And they questioned why autistic individuals who had appeared on national television and addressed crowds at Syracuse conventions would all be so nervous that none of them would get a single answer right.

Despite mounting evidence, most supporters of facilitated communication, especially parents like Marianne Kallen, who wrote this song about F/C, were undaunted. They had invested their hopes and dreams in F/C and had their own proof that it worked, at least for their children.

Ms. HAYDUKE: My validation that it was Stacy who was communicating came a few weeks ago. Now my husband has this attitude about her and he's found out that if he does this, it absolutely makes her laugh. She just goes crazy. He wiggles his nose. So now when they greet each other, it's like this. And so now she's in love with Dad and I've been trying to teach her how to type out "Dad" and I will admit that, yes, I am taking her hand and I am going, "D-A-D," and I'm, "Please, Stace, let's learn how to do 'Dad'." And she won't learn "Dad." But one day, Dad wasn't in the house and she came home and she's looking around, trying to find out where he is. And so she goes, "Uh! Uh! Uh! Uh! Uh!" And she gets her board and she starts pointing at the board. And I said, "What do you want to tell me? What do you want to tell me?" And she typed out, I-M-S-N-O-S." I said, "What are you saying?" And it's simple. It's shorthand: "I miss nose." We have been trying to teach her the word for Dad and she has created her own word for Dad.

ARTHUR L. SCHAWLOW: I don't need any more validation. My son has given me a lot of information, much of which I didn't know. A lot of it's been about what he wanted and it's turned out that that's what he did want. He asked even for a trip to Hawaii and he sat, good as gold, on the plane for five hours to Hawaii. And occasionally he tells me something I didn't suspect, like at the restaurant a few weeks ago, he said-- he typed out, "Look at her mane"-- M-A-N-E. Well, I looked and the waitress had a ponytail.

NARRATOR: Parents' attitudes to the scientific studies were summed up in a statement typed by Jeff Powell and read by his facilitator, Sue Harms.

SUE HARMS: [reading] "Regarding the recent controversy about facilitated communication, we are extremely angry about the well-to-do critics who are giving Doug a disheartening review. We are the ones saying the words and we are questioning the expertise of you and your compassion for autistic students. And please encourage us and Doug to be able to become a part of your world and get the hell out of our world."

NARRATOR: But there was now too much at stake. Whether F/C was true or false had become a matter of great public interest. F/C networks had been established in 38 states. Millions of dollars of public money were being spent providing facilitators in schools and adult centers. Plans were being made for people to take their facilitators to college and even into the workplace. All this had happened without any public debate.

From public prosecutors to special educators, from social workers to parents, in their enthusiasm to adopt facilitated communication, they had chosen to overlook a number of things about F/C that simply didn't make sense. Skeptics wondered how thousands of autistic people could have taught themselves to read and write just by watching television. And why should disabled individuals who can point by themselves need someone to hold their hands to type?

And, most significantly, they point out, why is it that most of the time most of the autistic individuals are not looking at the keyboard? It's certainly true that a touch typist can type without looking at the keyboard. Connie Chisari, star graduate of the Katherine Gibbs school, can type 100 words a minute without looking. She has memorized the layout of the keys. But before starting, she registers her hands in a home position. This is her reference.

FRONTLINE wanted to see if she could type with one finger without looking. Despite her intimate knowledge of the keyboard, she can't. Nobody can. Without a reference, it's just impossible.

Dr. SHANE: You can't be a one-finger typist and not look at the keyboard. You just can't get oriented. You don't have a home position. And when you watch children who are F/C -- facilitated communication -- users, they may not be looking at the language board, but the facilitators are not taking their eyes off it. They're fixed on it.

FACILITATOR: What's 6 times 2? Good! Okay. And space. What's 12 times-- 12 plus 1? You carried the 1, remember? What's 12 plus 1? Excellent! Give me five! Okay.

NARRATOR: Doug Biklen admits that typing without looking is impossible. So what's going on in the Syracuse schools?

Dr. BIKLEN: It's not good technique. It's very sloppy and I think it really raises questions about that particular typing and-- as well it should. And what we need to do is to harp on facilitators to monitor eyes. It's-- it's a lot for people to manage but I think we have to do it.

NARRATOR: But does the Facilitated Communication Institute practice what it preaches? In the conference last May, Annegret Schubert, arguably the most expert facilitator in the world, gave a seminar on the importance of clients looking at the keyboard.

ANNEGRET SCHUBERT: Is there anything you want to share with me about it?

NARRATOR: Yet minutes afterwards, she was in the corridor talking to a man with his eyes closed and a letter board moving around in the air. And even when Doug Biklen was present, we filmed Jeff Powell typing while looking at the ceiling, something Biklen concedes is impossible.

As Biklen admits, this is a serious matter. If the autistic individuals are not looking, then the facilitators are effectively putting words into their mouths. Scientists in Australia had warned Biklen of such dangers. This videotape especially concerned them. Rosemary Crossley, the founder of F/C, is facilitating with a head injury victim in a coma to make a very important decision about where he will live. Because the man is in a coma, his head pointer barely moves throughout the taping. By drawing a line on the screen it is easy to see that Rosemary Crossley is ever so slowly moving the board.

Dr. SHANE: I don't think they're doing it consciously, but they're absolutely manipulating these individuals and they're communicating for them. And I don't think that that's-- I don't think that's acceptable. I don't think that other people have the right to communicate for someone else.

NARRATOR: The scientific evidence suggested that, far from unlocking the minds of autistic individuals, F/C tapped the unconscious thoughts of the facilitator. The process, skeptics say, is not unlike what goes on with a ouija board. As letters are built up, hypotheses are formed about what comes next. The facilitator who attributes the output to the autistic individual is unaware they are controlling the typing. The autistic individual becomes so sensitized to respond to tiny cues that they become an amplifier for the facilitator's unconscious.

INTERVIEWER: Do you ever have a nightmare that, instead of liberating people, F/C might end up enslaving them?

Dr. BIKLEN: Yeah, that-- that worries me. That worries me, that people would be in some way-- you know, that people are being influenced. There's over-- there's interpretation of things that-- you know, we see that happening and it troubles me. It troubles me. I think it's terrible.

ATTORNEY: Did he fuck you in your mouth?

FACILITATOR: No.

ATTORNEY: Did he fuck your toes?

NARRATOR: But what explains the high number of facilitated abuse allegations? While most courts have refused to accept F/C as genuine communication, earlier this year a judge in Wichita, Kansas, allowed a nonverbal autistic boy to give testimony through F/C.

ATTORNEY: Did he fuck your butt?

FACILITATOR: Yes.

Dr. SHANE: Why the facilitator is making these allegations on behalf of the child, I don't know. Whether they've been abused themselves-- I don't have any-- any sense of that. Maybe they've been persuaded. If you look at the literature from Syracuse University, they're suggesting that 10 percent of-- make that 13 percent of the children in their initial study had alleged that they had been sexually abused. Now, if I attended a conference and I was told that 13 percent of the people in the initial study had been sexually abused, I'd go home and wonder, "Well, maybe my students are being sexually abused," so maybe this-- maybe the idea is being planted.

NARRATOR: Syracuse University is now in the position of having an institute dedicated to researching, teaching and promoting a technique that all the scientific evidence says is not real. The University even has seven students doing research theses on facilitated communication.

A well-meaning social movement aimed at giving a voice to a group of disabled individuals has developed into a bitter controversy which some critics have dubbed the "cold fusion of human services." They ask why millions of dollars were spent on a technique without first proving it worked and, if unproven, why did thousands of autistic children waste precious years sitting in advanced classes instead of more appropriate education?

These are also the questions families like the Gherardis are asking, families whose lives have been turned upside down by F/C. After nine court appearances, social services carried out a controlled test of Matthew which proved he wasn't capable of authoring the accusations against his father. Last February the prosecutor dropped the case and the family was reunited to continue with their lives. The facilitator left the state, but the school continues to believe in F/C.

Mr. GHERARDI: No one has ever apologized. In fact, to this day, we still sense that the administration at the high school will never admit that they were wrong. They want to continue to say that facilitated communication is successful.

If a new drug had just been discovered, it wouldn't be something that would be just thrown out into the market. It would take years of studies before this medication would be marketed. It's the same way facilitated communication should be treated. I mean, why should that be thrown out and people's lives devastated because they're trying it out on us guinea pigs?

I think a lot of parents are grabbing at straws and are hoping that facilitated communication is going to be the answer for them and I think they've been blinded by it. And I feel for these people, these parents that believe in it, because I certainly can understand where they're coming from. But until we face it head on and do more scientific investigations of it, then these poor parents out there are going to be-- are going to be in the dark over what's actually happening to their child.

Ms. PITSAS: I know, for myself, I wanted so hard to believe that it was real, that I wasn't able to listen to objective thinking about it, because it grabs you emotionally right here and once you're hooked, I mean, you are hooked. It-- you just-- I don't think I was capable of rationally thinking about it because I had clues even before we did our study, that there was facilitator influence taking place in other places. People had done studies in Australia and I said, "Oh, we-- that doesn't happen here. We aren't using the same-- we aren't using it the same way. We aren't holding letter boards in the air. We have them down on the table, so therefore that limits the influence that could be taking place." Well, I was dead wrong.

Mr. WHEELER: It was amazing to me to see how willing people are to abandon their beliefs and adopt a new belief without verification and do that virtually overnight, because it happened to myself. And when I think back on it, if I had just thought about the literature on autism and thought about the studies I was familiar with, I would have known that the phenomenon of F/C was illogical, that it probably couldn't exist, but I was so caught up in the emotionality of it. And it just taught me a lot about human nature.

NARRATOR: Despite everything, Douglas Biklen and the Syracuse Facilitated Communication Institute remain committed to F/C. They believe that time will prove them right.

Dr. BIKLEN: I don't say I'll refuse to accept any amount of evidence. I never said that.

INTERVIEWER: What amount of evidence would you accept?

Dr. BIKLEN: What I've said is, we already have some evidence that this is for real. I think the challenge is, can we demonstrate it for, you know, each person who is using it. That's the challenge.

It's very easy to fail in one's attempt to demonstrate something. It's usually more difficult to be successful. So it almost doesn't matter how many instances of failed studies we have. What we need with any one individual are instances where the person succeeded.

Dr. SHANE: And when it gets to the letter that he wants, he hits the switch, as he just did.

VOICE SYNTHESIZER: I am hot.

STAFFER: I know. It's really hot in here, isn't it.

Dr. SHANE: Oh, thanks, Tony. And Tony just told us he's hot.

I've tried to find a middle ground. I don't know what the middle ground is. Either it works or it doesn't work. It doesn't work, so we have to abandon it. Abandoning it means that we just go back to-- come back to where we are, come back to reality.

NARRATOR: One day, the mysterious condition of autism will be understood and researchers may find a cure. Until then, as the evidence against facilitated communication accumulates, a painful question remains, whether parents and those who care deeply about autistic individuals are choosing to see them as they would like them to be, rather than respecting them for who they are.

ANNOUNCER: Next time on FRONTLINE, inside the Rocky Flats nuclear weapons plant.

NUCLEAR WORKER: I was the one who was contaminated. My hair, my hands, my sleeves-- everything was hot.

ANNOUNCER: FRONTLINE investigates 30 years of accidents, cover-ups and contamination at Rocky Flats.

CORRESPONDENT: After all the secrecy, it turns out no one knows what's here or what it may do.

ANNOUNCER: "Secrets of a Bomb Factory" on FRONTLINE.

Copyright (c) 1993 WGBH Educational Foundation.

 

Credits

Written, Produced and Directed by
JON PALFREMAN

Associate Producer
MICHELLE NICHOLASEN

Editor
JAMES RUTENBECK

Narrator
WILL LYMAN

Camera
BRIAN DOWLEY, PETER HOVING, GARY P. MAIORANO, D'ARCY MARSH, JOE VITAGLIANO

Sound
FRED BURNHAM, JOHN CAMERON, FRANK COAKLEY, JEFFREY MERCER, JOHN OSBORNE

Additional Field Editing
MICHELLE NICHOLASEN

Graphics
JED SCHWARTZ

Voiceovers
PETER HAYDU, WENDY SAKAKEENNY

On-Line Editors
MARK STEELE, JIM DEERING, STEPHEN BARACSI

Sound Mix
JOHN JENKINS

Special thanks:
Margaret Bauman
Carol Lee Berger
Gina Green
David Holmes
John Jacobson
Pam Joern
Sue Lehr
Ken Margolin
Patricia Minnes
Jan Nisbet
Bernard Rimland
Allen Schwartz
Alan Zwiebel
Laura & Mark Storch
Stephen Calculator
Rosemary Crossley
O.D. Heck Developmental Center
Schenectady, N.Y.
Boston Higashi School
Boston Children's Hospital
Edward Smith Elementary School
Syracuse, N.Y.
Jowonio School, Syracuse, N.Y.
Baker High School, Baldwinsville, N.Y.
The New England Center for Autism
Facilitated Communication Institute, Syracuse University

 

For FRONTLINE

Post Production Producer
ROBIN PARMELEE

Production Manager
HESH SHOREY

Post Production Supervisor
COLLEEN WILSON

Off-line Editor
JANIS L. HENWOOD KHORSI

Production Assistant
KATHLEEN BOISVERT

Series Graphics
ALISON KENNEDY, JACK FOLEY

Closed Captioning
THE CAPTION CENTER

FRONTLINE Theme
MASON DARING, MARTIN BRODY

Staff Producers
JUNE CROSS, JIM GILMORE

Staff Reporter
JOE ROSENBLOOM III

Production Assistants
COURTNEY HAYES, MIRI NAVASKY

Director of Promotion
JIM BRACCIALE

Publicist
STEPHANIE MURPHY

Special Projects Assistant
DIANE HEBERT

Office Coordinator
DIANE LEONE

Special Projects Assistant
MARY E. CANNING

Project Secretary
EILEEN WARREN

Unit Managers
ROBERT O'CONNELL, DEBRA GORFINE

Director of Administration
KAI FUJITA

Series Editor
MARRIE CAMPBELL

Senior Producers
MARTIN SMITH, MICHAEL SULLIVAN

Executive Editor
LOUIS WILEY, Jr.

Executive Producer
DAVID FANNING

(c) 1993
WGBH Educational Foundation
All Rights Reserved