WEBVTT 00:00:11.378 --> 00:00:13.994 ANNOUNCER: These children cannot speak. 00:00:13.994 --> 00:00:16.981 No one knows what's going on inside their heads. 00:00:16.981 --> 00:00:19.086 They're autistic. 00:00:20.954 --> 00:00:25.592 Tonight on FRONTLINE, the explosive story of a revolutionary method of communication. 00:00:25.592 --> 00:00:29.414 Dr. Biklen: Here was a means of expression for people who lacked expression 00:00:29.414 --> 00:00:33.761 and here was a way that you could find out what people were feeling and 00:00:33.761 --> 00:00:35.601 what they were thinking. 00:00:35.601 --> 00:00:38.673 ANNOUNCER: FRONTLINE investigates facilitated communication 00:00:38.686 --> 00:00:41.534 --the theory, the practice and the controversy. 00:00:41.534 --> 00:00:44.423 PHIL WORDEN: God, it's really true. This stuff is bogus. 00:00:44.423 --> 00:00:46.417 You know, it's just so clear and so unmistakable 00:00:46.417 --> 00:00:48.282 as I was sitting there watching this. 00:00:49.666 --> 00:00:56.311 ANNOUNCER: Tonight on FRONTLINE, "Prisoners of Silence." 00:00:58.792 --> 00:01:01.296 Funding for Frontline is provided 00:01:01.296 --> 00:01:05.343 by the Corporation for Public Broadcasting 00:01:05.343 --> 00:01:09.436 and by annual financial support from viewers like you. 00:01:11.895 --> 00:01:17.404 This is FRONTLINE 00:01:29.274 --> 00:01:32.750 CHILDREN: [singing] If you're happy and you know it, clap your hands 00:01:32.750 --> 00:01:36.217 If you're happy and you know it, clap your hands 00:01:36.217 --> 00:01:38.658 If you're happy and you know it-- 00:01:38.658 --> 00:01:41.480 NARRATOR: Every American child knows this song. 00:01:41.480 --> 00:01:45.205 They can feel happy and they know what it is like to feel happy. 00:01:49.350 --> 00:01:50.967 But to children growing up 00:01:50.967 --> 00:01:53.079 with the strange condition of autism, 00:01:53.079 --> 00:01:55.412 like these at the Boston Higashi School, 00:01:55.412 --> 00:01:58.775 the words may not mean much at all. 00:01:58.775 --> 00:02:02.192 Something has gone wrong with their developing brains. 00:02:02.192 --> 00:02:05.153 The children have a faraway look. 00:02:05.153 --> 00:02:07.793 Generally they shun human contact. 00:02:13.437 --> 00:02:15.686 The mysterious condition of autism 00:02:15.686 --> 00:02:18.576 affects close to 400,000 Americans. 00:02:18.576 --> 00:02:20.966 Most have little or no speech. 00:02:20.966 --> 00:02:23.576 Eighty percent are mentally retarded. 00:02:23.576 --> 00:02:25.638 While the condition can be treated, 00:02:25.638 --> 00:02:26.964 there's no cure. 00:02:27.804 --> 00:02:29.434 Until three years ago, 00:02:29.434 --> 00:02:32.842 this was the generally accepted theory of autism. 00:02:32.842 --> 00:02:35.575 But then a radical and controversial new technique 00:02:35.575 --> 00:02:40.060 called "facilitated communication" took America by storm. 00:02:40.060 --> 00:02:43.398 Today, thanks to facilitated communication, 00:02:43.398 --> 00:02:47.084 Jeff Powell, once written off as profoundly retarded, 00:02:47.084 --> 00:02:52.305 sits in class doing algebra. 00:02:52.305 --> 00:02:58.246 [applause] 00:03:00.260 --> 00:03:02.749 Profoundly autistic Ben Lehr can't speak, 00:03:02.749 --> 00:03:05.198 but can type his thoughts to an audience of people. 00:03:08.423 --> 00:03:10.755 Dr. DOUGLAS BIKLEN: [reading Ben Lehr's words] "Feel like you need 00:03:10.755 --> 00:03:14.532 patient friends like Michael. They fight for me." 00:03:17.090 --> 00:03:18.309 [applause] 00:03:18.309 --> 00:03:22.087 NARRATOR: Professor Douglas Biklen of Syracuse University thinks 00:03:22.087 --> 00:03:24.856 it is the most important breakthrough in autism ever 00:03:24.856 --> 00:03:27.396 and is promoting it enthusiastically. 00:03:29.413 --> 00:03:31.808 The theory of facilitated communication claims 00:03:31.808 --> 00:03:34.186 that many, perhaps most autistic people, 00:03:34.186 --> 00:03:36.852 are not retarded, but have intelligent minds 00:03:36.852 --> 00:03:38.936 imprisoned in bad bodies. 00:03:41.501 --> 00:03:44.686 FACILITATOR: Are, either, for-- good. 00:03:44.686 --> 00:03:47.712 Go ahead. Delete. Did you want to delete that? 00:03:49.472 --> 00:03:51.364 NARRATOR: Biklen argues that autistic individuals 00:03:51.364 --> 00:03:53.746 like Ellen have many things to say 00:03:53.746 --> 00:03:55.562 but are unable to say them 00:03:55.562 --> 00:03:58.148 because her body will not do what her mind wants. 00:03:58.148 --> 00:03:59.827 But with a little help, 00:03:59.827 --> 00:04:02.238 or facilitation -- holding her hand, 00:04:02.238 --> 00:04:03.474 wrist or elbow -- 00:04:03.474 --> 00:04:06.775 her body's often jerky movements can be smoothed out, 00:04:06.775 --> 00:04:09.561 allowing her to type letters on a keyboard. 00:04:09.561 --> 00:04:16.615 FACILITATOR: --TALK-- I, N, G-- 00:04:16.615 --> 00:04:19.459 NARRATOR: When Douglas Biklen discovered the method 00:04:19.459 --> 00:04:21.123 during a visit to Melbourne, Australia, 00:04:21.123 --> 00:04:25.135 he realized that everything known about autism might be wrong. 00:04:26.220 --> 00:04:27.546 Dr. BIKLEN: I knew that I had seen 00:04:27.546 --> 00:04:29.722 something terribly important. 00:04:29.722 --> 00:04:31.396 Here was a means of expression 00:04:31.396 --> 00:04:33.229 for people who lacked expression 00:04:33.229 --> 00:04:35.455 and here was a way that you could find out 00:04:35.455 --> 00:04:38.995 what people were feeling and what they were thinking. 00:04:38.995 --> 00:04:41.368 And, you know, these were people 00:04:41.368 --> 00:04:45.014 who had a disability the very definition of which 00:04:45.014 --> 00:04:47.276 suggested that the people might not have feelings 00:04:47.276 --> 00:04:51.091 and certainly no ability to empathize 00:04:51.091 --> 00:04:52.210 with other people's feelings. 00:04:52.210 --> 00:04:54.987 This was a disability the very definition of which 00:04:54.987 --> 00:04:58.008 was that people lacked imaginative ability. 00:04:58.008 --> 00:05:00.525 Well, I mean, you know, how do you do 00:05:00.525 --> 00:05:04.366 higher order mathematics without an imagination? 00:05:04.366 --> 00:05:07.298 How do you write poetry without an imagination? 00:05:07.298 --> 00:05:11.547 So it was quite clear that this was 00:05:11.547 --> 00:05:14.968 a means of expression that was revolutionary. 00:05:17.445 --> 00:05:20.873 NARRATOR: The O.D. Heck Center for the Developmentally Disabled 00:05:20.873 --> 00:05:24.144 in Schenectady, New York, runs a large autism program. 00:05:27.733 --> 00:05:29.497 Before facilitated communication, 00:05:29.497 --> 00:05:31.994 the staff never imagined that any 00:05:31.994 --> 00:05:36.669 of their nonverbal clients might be of normal intelligence. 00:05:37.759 --> 00:05:40.186 But then speech pathologist Marian Pitsas 00:05:40.186 --> 00:05:44.059 heard about the new technique being promoted at Syracuse University. 00:05:48.991 --> 00:05:51.117 Together with her colleague Jimmy Maruska, 00:05:51.117 --> 00:05:53.268 she went to find out how it worked. 00:05:56.215 --> 00:05:58.509 MARIAN PITSAS: Three of us went for the training first 00:05:58.509 --> 00:06:01.171 and we rapidly trained everyone in our program, 00:06:01.171 --> 00:06:04.399 all three shifts, and had many, many clients typing 00:06:04.399 --> 00:06:07.470 at varying levels and with varying degrees of success 00:06:07.470 --> 00:06:10.158 but it spread very, very quickly. 00:06:13.189 --> 00:06:14.473 I thought it was wonderful. 00:06:14.473 --> 00:06:16.964 At last we were going to-- we were going to 00:06:16.964 --> 00:06:18.338 help these people communicate. 00:06:18.338 --> 00:06:20.967 We would find out what they really understood. 00:06:24.320 --> 00:06:27.480 JIMMY MARUSKA: Before, they were just another person 00:06:27.480 --> 00:06:29.107 that I was helping with and teaching them 00:06:29.107 --> 00:06:31.558 some basic skills to help them survive out there, 00:06:31.558 --> 00:06:34.643 but then here along comes a person that can share their thoughts, 00:06:34.643 --> 00:06:36.418 that can talk to me. 00:06:36.418 --> 00:06:37.471 I can talk to them. 00:06:37.471 --> 00:06:39.957 We can have a conversation that's relevant. 00:06:39.957 --> 00:06:43.563 It was great. It was really super. 00:06:43.563 --> 00:06:45.399 I mean, you couldn't ask for anything more. 00:06:45.399 --> 00:06:46.753 All of a sudden, these people that 00:06:46.753 --> 00:06:48.253 we always treated as low-functioning 00:06:48.253 --> 00:06:49.998 were right up there with us. 00:06:52.300 --> 00:06:53.364 NARRATOR: Ray Paglieri, 00:06:53.364 --> 00:06:55.060 the director of the autism program, 00:06:55.060 --> 00:06:57.021 realized the enormous implications 00:06:57.021 --> 00:06:59.837 of the typed messages his clients were now producing. 00:06:59.837 --> 00:07:01.528 RAY PAGLIERI: I was thinking 00:07:01.528 --> 00:07:04.275 that certainly a large number, 00:07:04.275 --> 00:07:06.153 if not all of the folks that we were working with 00:07:06.153 --> 00:07:08.685 may, in fact, have normal intelligence. 00:07:08.685 --> 00:07:11.088 I mean, we had people typing sentences, 00:07:11.088 --> 00:07:12.178 paragraphs, alike. 00:07:12.178 --> 00:07:14.398 We were thinking here we were going to 00:07:14.398 --> 00:07:16.527 redefine the whole notion of what autism is all about. 00:07:16.527 --> 00:07:20.435 We trained the rest of our staff, okay? 00:07:20.435 --> 00:07:22.060 We literally were encouraging people 00:07:22.060 --> 00:07:23.381 to work with everybody in the program. 00:07:23.381 --> 00:07:24.702 We were training as many people as we could, 00:07:24.702 --> 00:07:26.196 training people out in the community. 00:07:26.196 --> 00:07:27.230 I mean, we were excited. 00:07:27.230 --> 00:07:29.596 We looked at it as literally a breakthrough technique. 00:07:31.112 --> 00:07:32.343 NARRATOR: So did the media. 00:07:32.343 --> 00:07:36.810 ANNOUNCER: [January 25, 1992] PrimeTime. Now, from New York, Diane Sawyer. 00:07:36.810 --> 00:07:39.027 DIANE SAWYER: And now a story about hope. 00:07:39.027 --> 00:07:42.334 For decades, autism has been a dark mystery, 00:07:42.334 --> 00:07:45.745 a disorder that seems to turn children in on themselves, 00:07:45.745 --> 00:07:46.837 against the world. 00:07:46.837 --> 00:07:49.240 Tonight, however, you are going to see something 00:07:49.240 --> 00:07:52.397 that has changed that. Call it a miracle. 00:07:52.397 --> 00:07:54.395 Call it an awakening. 00:07:57.885 --> 00:07:59.271 NARRATOR: Word of the new miracle 00:07:59.291 --> 00:08:01.935 of facilitated communication spread rapidly. 00:08:04.058 --> 00:08:08.713 Parents told teachers and teachers told parents. 00:08:12.167 --> 00:08:14.469 TEACHER: The system that carries matter 00:08:14.469 --> 00:08:16.791 from one place to another? 00:08:17.328 --> 00:08:19.425 NARRATOR: Many schools embraced it. 00:08:19.425 --> 00:08:21.276 At Edward Smith Elementary School in Syracuse, 00:08:21.276 --> 00:08:23.559 children previously thought to be retarded 00:08:23.559 --> 00:08:26.055 now sat in classes with their peers, 00:08:26.055 --> 00:08:28.488 receiving age-appropriate instruction, 00:08:28.488 --> 00:08:32.855 studying math, studying biology. 00:08:35.924 --> 00:08:38.772 TEACHER: Plasma is correct PJ, nice job. 00:08:39.467 --> 00:08:41.339 Dr. BIKLEN: Maybe you can say what you want to point to. 00:08:41.779 --> 00:08:44.282 NARRATOR: A large group of individuals had, 00:08:44.282 --> 00:08:47.589 in Biklen's view, been greatly underestimated simply 00:08:47.589 --> 00:08:50.087 because they could not speak or control their bodies. 00:08:51.127 --> 00:08:52.736 Dr. BIKLEN: Why don't you show us and then you try to say it. 00:08:52.736 --> 00:08:53.645 That's good. 00:08:54.834 --> 00:08:57.034 Dr BIKLEN: I had always believed that it was important 00:08:57.034 --> 00:08:59.817 to treat people as competent, 00:08:59.817 --> 00:09:02.515 even though they didn't give off the signs of it. 00:09:02.515 --> 00:09:06.654 To me,that was just the-- the humane thing to do. 00:09:06.654 --> 00:09:08.907 That was the sensitive thing to do. 00:09:10.351 --> 00:09:13.827 The wonderful thing about facilitated communication 00:09:13.827 --> 00:09:16.837 is that once a person begins to communicate, 00:09:16.837 --> 00:09:19.919 you can ask the person, "What's going on here?" 00:09:20.877 --> 00:09:22.581 Dr BIKLEN: Excellent! You got it right. 00:09:24.750 --> 00:09:26.083 NARRATOR: The words that emerged 00:09:26.083 --> 00:09:28.882 from the electronic communicators and letter boards 00:09:28.882 --> 00:09:30.688 spoke of loneliness, 00:09:30.688 --> 00:09:33.907 of being trapped in a prison of silence, 00:09:33.907 --> 00:09:37.246 of slavery and of freedom. 00:09:40.809 --> 00:09:44.181 For Biklen, a simple technique had redefined 00:09:44.193 --> 00:09:46.825 an entire group of disabled people. 00:09:46.825 --> 00:09:49.145 Jeff Powell, for example, is no longer seen 00:09:49.145 --> 00:09:51.900 by his teachers and peers as mentally retarded. 00:09:51.900 --> 00:09:56.119 He has become a celebrity at Baker High School in Syracuse. 00:09:57.779 --> 00:10:00.519 They stress he's an academically gifted student 00:10:00.519 --> 00:10:03.016 who writes poetry for the school yearbook. 00:10:14.138 --> 00:10:15.522 But some people had their doubts 00:10:15.522 --> 00:10:17.165 about facilitated communication. 00:10:17.165 --> 00:10:19.935 Dr. Howard Shane has devoted his life 00:10:19.935 --> 00:10:23.185 to helping disabled nonverbal people to communicate. 00:10:23.185 --> 00:10:25.555 At Boston Children's Hospital, 00:10:25.555 --> 00:10:28.644 he runs a center which finds technological solutions 00:10:28.644 --> 00:10:31.754 enabling disabled people like Tony Bonfiglio 00:10:31.754 --> 00:10:35.244 who has cerebral palsy, to communicate independently. 00:10:48.241 --> 00:10:50.655 Dr. SHANE: We have this saying in our center 00:10:50.655 --> 00:10:53.255 that no person is too physically disabled 00:10:53.255 --> 00:10:54.577 to be unable to communicate. 00:10:54.577 --> 00:10:57.636 The slightest movement, winking of an eye, 00:10:57.636 --> 00:11:01.501 moving of an eyebrow, sipping and puffing on a switch-- 00:11:01.501 --> 00:11:04.826 on--on a straw would control a switch-- 00:11:04.826 --> 00:11:09.143 finding that subtle movement is all you need 00:11:09.143 --> 00:11:11.153 to be able to control the technology. 00:11:11.153 --> 00:11:15.122 VOICE SYNTHESIZER: Yes, I have made many good friends. 00:11:15.122 --> 00:11:18.534 NARRATOR: Thanks to computers, thousands of nonverbal people 00:11:18.534 --> 00:11:20.590 can express themselves independently. 00:11:20.590 --> 00:11:23.649 With such equipment available, Shane questioned, 00:11:23.649 --> 00:11:27.465 why should autistic people need another person to hold their hands? 00:11:27.465 --> 00:11:30.389 Biklen says autism is special. 00:11:31.147 --> 00:11:33.966 Dr. BIKLEN: Last week, I had conversations 00:11:33.966 --> 00:11:34.713 with several people. 00:11:34.713 --> 00:11:39.783 One person said, "It slows me down. 00:11:39.783 --> 00:11:41.865 It helps me by slowing me down. 00:11:41.865 --> 00:11:44.863 When I'm not slowed down, I get garbage. 00:11:44.863 --> 00:11:49.780 I get unwanted words. I get a lot of letters strung together 00:11:49.780 --> 00:11:52.470 that don't make a word. When I'm slowed down, 00:11:52.470 --> 00:11:54.085 I can type what I want." 00:11:58.631 --> 00:12:00.892 NARRATOR: But critics like Shane were amazed 00:12:00.892 --> 00:12:02.208 at the sophisticated output. 00:12:02.208 --> 00:12:05.218 Autistic children of 5 and 6 produced 00:12:05.218 --> 00:12:06.904 perfectly spelled sentences. 00:12:09.899 --> 00:12:12.007 Where had they learned to read and write? 00:12:17.779 --> 00:12:20.156 A difficult question had to be faced. 00:12:20.156 --> 00:12:22.995 Was the typing coming from the autistic individual 00:12:22.995 --> 00:12:25.679 or from the facilitator? 00:12:26.851 --> 00:12:29.025 Dr. SHANE: The outcomes that were being reported 00:12:29.025 --> 00:12:30.371 were just so far out of line 00:12:30.371 --> 00:12:32.114 with what anyone had ever found. 00:12:33.814 --> 00:12:36.829 They're communicating in grammatically complete sentences. 00:12:36.829 --> 00:12:39.894 They're marking the tense correctly. 00:12:39.894 --> 00:12:41.614 Their spelling is accurate. 00:12:41.614 --> 00:12:45.742 They have insights that go far beyond their years. 00:12:45.742 --> 00:12:48.387 Dr. BIKLEN: [reading] "Understanding is so hard. 00:12:48.387 --> 00:12:51.275 I long to see it real. 00:12:51.275 --> 00:12:56.274 I just hope, really hope, it's not a lost ideal. 00:12:56.274 --> 00:13:00.495 As I said, many of the accounts coming from people with-- 00:13:00.495 --> 00:13:04.558 who are using facilitated communication as their means of expression 00:13:04.558 --> 00:13:06.854 have to do with loneliness. 00:13:06.854 --> 00:13:09.202 Dr. BILKEN: I think it's rather obvious that the way 00:13:09.202 --> 00:13:11.128 in which these children learned to read 00:13:11.128 --> 00:13:13.577 was the way that most of us learned to read-- 00:13:13.577 --> 00:13:17.434 that is, by being immersed in a language-rich environment. 00:13:17.434 --> 00:13:20.493 You go into good pre-school classrooms 00:13:20.493 --> 00:13:23.714 and you'll see words everywhere, labeling objects, 00:13:23.714 --> 00:13:25.021 labeling pictures. 00:13:25.021 --> 00:13:28.000 You look at Sesame Street. 00:13:28.000 --> 00:13:29.462 We're introducing words. 00:13:29.462 --> 00:13:31.553 We're giving people whole words. 00:13:31.553 --> 00:13:33.744 We're also introducing them to the alphabet. 00:13:33.744 --> 00:13:35.587 On the other hand, having said that, 00:13:35.587 --> 00:13:39.269 it does seem to me that there's something unusual going on here 00:13:39.269 --> 00:13:42.272 when you see a number of children with autism 00:13:42.272 --> 00:13:45.394 who seem to have precocious ability. 00:13:45.394 --> 00:13:46.871 That is, they know a lot of words 00:13:46.871 --> 00:13:51.970 and very often, you know, quite long words. 00:13:51.970 --> 00:13:54.790 You know, how is this? Is there something 00:13:54.790 --> 00:13:58.551 about the disability that allows them to focus in on language 00:13:58.551 --> 00:14:02.338 and to be able to put together words? 00:14:03.518 --> 00:14:05.428 NARRATOR: A very small number of autistic people, 00:14:05.428 --> 00:14:08.684 "savants," have spectacular abilities in narrow areas. 00:14:08.684 --> 00:14:12.557 EXPERIMENTER: The 17th of December, 1974. 00:14:12.557 --> 00:14:17.145 SAVANT: That was a-- a Tuesday. 00:14:17.145 --> 00:14:21.524 EXPERIMENTER: The 10th of June, 1917. 00:14:21.524 --> 00:14:28.990 SAVANT: It-- it was a-- a Sunday. 00:14:28.990 --> 00:14:34.802 EXPERIMENTER: The 1st of March, 2044. 00:14:34.802 --> 00:14:39.206 SAVANT: It-- it will be a Tuesday.