Breaking the Silence
Good morning. Hello. Hello. Hello?'' It is as though she is knocking at the door to an empty room.On the videotape, Kathy Milam--a 40-year-old teacher with short gray hair, dressed in a blue sweater and slacks--is bending down, struggling to make eye contact with Brian Meredith, a 2nd grade boy in a blue rugby shirt. He averts his enormous brown eyes, burying his chin deep in his chest to hide a smile."Would you like to say hello, Brian?'' Milam asks again, taking his small hand in hers to shake it. "Hello. How are you? Fine, thank you. Say, 'Fine, thank you.'But Brian does not speak. He rocks back and forth in his tiny, navy blue chair, peering sideways at the camera or tilting his curly head back to gaze directly at the overhead lights. In an instant, his elegant, mahogany fingers move through the air as though he were playing an imaginary harp.
"Push,'' Milam says to Brian, holding out an IntroTalker, a "talking'' keyboard that is programmed to "speak'' simple phrases when children learn to press the correct buttons. Brian hesitates, as though he doesn't know what he is being asked to do.
"Use your fingers,'' she says. But Brian's fingers have a mind of their own. They fan the air again. He looks lost.
Milam takes his fingers and pushes the keys for him. "Hello,'' the computer voice says. "I'm fine, thank you.''
Then she moves to the next child and repeats the exercise exactly.
This videotape of Classroom 210 at the Poplar Tree Elementary School in Chantilly, Va., was shot by Fairfax County school officials in November 1990. It portrays life as it used to be for Brian, as it generally was for the four kids in Milam's class. Hers is a classroom for children with autism, or similar neurological disorders that severely impair the development of speech, motor skills, and social interaction.
Milam says that at the time the tape was made, "We were doing preschool-type stuff: matching letters, little animals, colors, shapes; concepts like boy/ girl, same/different; lots of pictures and songs; sight-reading simple words. This past fall, we were still working on counting to nine.''
Even with that level of work, she says, "Brian never really acted like he knew what was going on.''
In truth, she was not sure any of them knew. Her class was in psychological jargon "low functioning,'' meaning her students had little or no ability to speak or write and had scored in the retarded ranges on the school district's standard psychological placement tests.
Then, in November 1991, something happened that fundamentally changed the lives of everyone in Classroom 210.
Milam found a way for all of these kids to "talk,'' as they call it, on a computer. She began using a method known as "facilitated communication,'' in which she supports the children's hands or arms as they hunt and peck out letters on the keyboard. Milam had read about the method, which was developed in Australia, then introduced in the United States in late 1989 by Douglas Biklen, a professor at Syracuse University. She was curious, but skeptical.
Following the steps Biklen had outlined in an article, Milam tried it with Brian. She seated him at the computer, put her hand under and around his--holding back all of his fingers except his index finger--and asked if there was anything he wanted. She clearly remembers the odd sensation when Brian pushed his index finger--and her hand with it--toward the keys. Slowly he typed "j-u-i-c.''
The next day, she asked him to identify picture cards. Up to that point, she knew only that Brian could match letters. He typed many words correctly, spelling some phonetically, as Milam and her assistant, Ann Merz, took turns supporting his arm. "Ann and I kept looking at each other and saying, 'I'm not doing this.''
It was soon obvious that 8-year-old Brian could read, spell, add, and subtract. And he was hungry to learn, Milam says. "We were no longer talking to somebody who wasn't part of this world anymore,'' she recalls.
By January, Brian wanted to talk about his world. "Ihaveautism,'' he typed. Milam asked him what it was like.
"Is there anything else you want to tell us?''
"Yes,'' he typed. "Iwanttohavepeopleytreatmelikeiamsmart.''
Today, Brian Meredith and his classmates still have autism--facilitated communication does not cure a disorder that has confounded experts for nearly 50 years. But the technique may ultimately overturn many of the traditional ideas about autism, particularly the notion that at least 70 percent of people with the disorder are mentally retarded, incapable of learning sophisticated skills or experiencing the full range of human emotions.
Interest in facilitated communication has spread through autism and special education communities like a brush fire, igniting controversy on two continents. Educators and parents-- anxious to try any approach that might allow nonverbal, disabled kids access to the speaking world--are pitted against psychologists and some autism experts who say facilitators can too easily influence typed communication, and insist that the technique be scientifically validated before it is widely used. (See "Helping Hands,'' page 18.)
"In my view, validating the method--determining that the autistic person is doing the typing and not responding to physical or facial cues from the facilitator--is the issue,'' says Gina Green, a behavioral psychologist at the Shriver Center in Waltham, Mass., and research director at the New England Center for Autism. Green believes the technique's usefulness must be "determined on a case-bycase basis,'' and hopes to evaluate its validity in a series of tests, the first in the United States. "I'll only be convinced by objective data,'' she says.
"It's not that this is so new,'' says James Harris, director of developmental neuropsychiatry at the Kennedy Krieger Institute at Johns Hopkins University, who used a typewriter to "talk'' to an autistic boy in 1971. What troubles Harris is that the processes involved are so mysterious. "Now that it's working, you need to figure out how it works,'' he says.
The actual hand support and training techniques in what is now called facilitated communication were developed in Australia by Rosemary Crossley in 1975. Crossley, who was working at an institution for the mentally retarded, discovered that if she supported the hands and arms of nonverbal patients with cerebral palsy, they could communicate by typing words on a keyboard.
Douglas Biklen, director of the division of special education and rehabilitation at Syracuse University and a specialist in mental retardation, met Crossley in 1985 while lecturing in Melbourne on mainstreaming disabled students into conventional classrooms. A year later, he began receiving letters from Crossley describing the sophisticated literacy skills of a nonverbal autistic boy whom she had taught to type using facilitated communication. "I was totally baffled by it,'' Biklen says. Everything he knew about autism led him to doubt Crossley.
Autism was first described in 1943 by Leo Kanner, a psychiatrist at Johns Hopkins, as a mental illness in which a child is unable to form relationships, understand feelings or communicate, and is sometimes self-destructive. For the next 20 years, autism was blamed on cold, unloving mothers. It was not until 1964 that Bernard Rimland, founder of the Autism Society of America, made a convincing case that autism was a neurological disorder, not a psychological condition.
Mental retardation and an inability to understand or respond to speech are usually associated with autism. Seventy percent or more of autistic people score in the retarded ranges on standard IQ tests that involve speech. Echolalic speech--the inappropriate parroting of language just heard or remembered--is a hallmark of autism. In the movie Rainman, Raymond Babbitt, the "high-functioning'' autistic brother--a character based on a composite of autistics and played by Dustin Hoffman--often repeats phrases and, when agitated, recites dialogue from an Abbott and Costello comedy routine.
Autistics who are usually nonverbal occasionally speak when distraught. Brian Meredith's mother remembers that on his third birthday, she mistakenly said, "You're 2 years old today,'' to which Brian angrily replied, "I'm 3!''
People with autism often exhibit strange, apparently uncontrollable behaviors that Biklen believed would interfere with typing--hand flapping, finger flicking, gazing at lights, using peripheral vision, screeching, and rocking. It seemed to Biklen, as he later wrote, that Crossley had merely "happened on a few people with autism for whom such communication was possible.''
In 1988, he went back to Australia and visited Dignity Through Education and Language, the government-supported communication training center where Crossley now works. "Once I saw it,'' Biklen recalls, "I knew that it was perhaps the most important thing I had seen in years in the disability field.''
What he saw was not "a few'' but 21 nonverbal autistic students writing out their thoughts, discussing concepts, and cracking jokes at typewriters, computers, and Canon Communicators-- small keyboard devices with paper tape outputs. Crossley and her staff supported the hands, arms, wrists, or elbows of the students, but did little else. "The first couple of people I saw were able to type with someone's hand just on their shoulder,'' Biklen says. Six were able to type independently most of the time.
With Biklen's help, teachers and speech pathologists in the Syracuse public schools started using the method in early 1990. Parents who heard about facilitated communication traveled to Syracuse to be trained. Biklen and his colleagues are now monitoring 70 people in Syracuse, 43 with autism, the remainder with Down syndrome, Rett syndrome, or mental retardation. But it is people with autism who Biklen believes will be most affected by facilitated communication. "The people we're working with are revealing that they have very strong feelings about other people,'' he says. "They want friends. It's a consistent theme among people with disabilities. They see themselves as people who want to have rich lives who want to love, who want to share their experiences, their perceptions. And why would it be different with people with autism?''
Two days before last Thanksgiving, Kathy Milam called Brian Meredith's mother. "Eunice,'' she said, "you have to see what happened in class today.''
Milam had decided not to say much to the parents about facilitated communication until she was sure their kids could do it. She didn't want to build up false hopes. "Cures'' for autism were like "cures'' for cancer. She'd seen plenty of them in the 17 years she'd been teaching autistic children, and undoubtedly these parents had, too. Besides, facilitated communication was a pilot program, controversial within the Fairfax school system.
"Can you come to school tomorrow morning?'' Milam asked.
Eunice Meredith, a dark-haired woman who shares her son's huge, round brown eyes, is a nurse and was off duty the next day. As soon as she got to school, Milam called Brian over to the computer and supported his hand as he typed answers to her questions. "When I saw what he could do,'' Eunice Meredith says, "I just couldn't believe what I was seeing.'' In her mind, she could still hear the depressing words of the psychiatrist who had evaluated Brian when he was 2: You might as well just stop looking for answers.
Two hours after visiting Poplar Tree, she went home so excited she began calling friends to tell them about Brian. She also told Brian's father, Leonard, a project manager at IBM, that he needed to plan a trip to the school immediately. Leonard Meredith was cautious. "I had to see it first,'' he says, but by the time he got home that day, "I was already planning things. I said, 'We're not going to have these little kiddie books around the house. We're insulting him.'' He went out and bought a children's atlas and a science encyclopedia.
After the euphoria passed, Eunice Meredith lived in panic for more than a month. "I was afraid that he'd come home from school, and there'd be a note in his book bag from Kathy that it was all a mistake and that he couldn't really do this,'' she says. "I was scared. I'd never had anything this good happen since Brian was born.''
But no note came. And Brian was not the only kid using facilitated communication anymore. All Milam's students had started typing, and one by one, she was calling in their parents. The parents of one child are reserving judgment about the method, and at their request, their child does not appear in this story.
Joan Roth, a lawyer and the mother of 7-year-old, blondhaired Kristina, says she was "in shock'' after her visit. Though Kristina speaks a little, she has a chromosome abnormality, called "Fragile X Syndrome,'' that produces autismlike symptoms. Her mother had been told she would probably never make more than slow progress. But after seeing Kristina type at the computer, Roth says, "Everything had to be rethought. I went from worrying whether Kristina would ever be able to live independently to laying awake wondering where would she go to college.''
In January, Liz Tomlinson came to watch her 8-year-old son, Graham, the first child Milam had tried to introduce to the method but the last to put it to use, stubbornly refusing until everyone else was typing. A social worker at a local hospital, Tomlinson had known that Graham--who was first thought to have cerebral palsy--had been able to read since he was 4. But he did not respond well to questions. He hadn't spoken in more than a year, and doctors at Georgetown University Hospital had labeled him "developmentally delayed.''
"That's the '90s euphemism for mentally retarded,'' Tomlinson says.
'When I saw Graham multiply faster than I could, the first emotion I was aware of was fear,'' she says. "It's been my hope, I guess, that he just wasn't tuned in enough to know how different he really is. I suddenly started to cry because I realized that he knows. He knows.''
To help explain the method, Milam gave articles on facilitated communication to the parents of her students. Eunice Meredith was particularly interested in one story from the Fairfax Journal about a boy in nearby Springfield who was using the technique. The name sounded familiar, and she realized she had once been in a parents' support group with the boy's mother, Mary Brooke. Meredith called Brooke and asked, "Is this your son, doing facilitated communication?''
Indeed, he was. Twelve-year-old Rusty Brooke has been using facilitated communication longer than most kids in the area, and his success with it has opened the door for hundreds of others. Brooke, 48, a former social studies teacher, was one of the first parents trained by Biklen, and when Eunice Meredith called, Brooke immediately referred her to Syracuse.
Brooke herself had helped bring the technique to the attention of Rusty's school, St. John's Child Development Center in Washington, D.C. St. John's, in turn, sponsored a workshop last January with Biklen's colleague, Annagrete Schubert, a speech pathologist and perhaps the most experienced trainer in facilitated communication in the United States. More than 200 teachers, parents, and speech therapists from nearby school districts crowded into the St. John's gym to hear Schubert. Fifty others had to be turned away at the door.
After the seminar, Schubert went to Rockville, Md., to introduce the method to Maggie Gannon, a nonverbal autistic child at Ritchie Park Elementary, and to train her teacher, Cora Connelly, and her mother, Susan, to facilitate. Once a self-abusive child prone to severe autistic tantrums stemming in part from her inability to make herself understood, 7-year-old Maggie now carries a small alphabet board with her so she can spell out what she wants to say. Since Schubert's visit, she has begun to read on a 2nd grade level and has become proficient enough at initiating communication that she cajoled her teacher into taking her to McDonald's after school to buy "f-r-i-e-s.''
The changes in Maggie's performance convinced school officials in Montgomery County, Md., that facilitated communication was worth offering to students with other kinds of disabilities. Likewise, Prince George's County, Md., will implement the method in some classes this fall. The D.C. public schools this past spring sent 15 special education teachers to be trained at St. John's.
Mary Brooke's interest in facilitated communication arose not from any special knowledge of it, but out of desperation. As tall, gangly, blond, blue-eyed Rusty approached adolescence, he had no adequate system of communication. Even as a small child, Rusty had been unable to let his mother know when he was hungry or thirsty. "He was missing the ability to indicate,'' says Mary Brooke, summarizing one of the classic traits of autism. "I see, now that facilitation has come along, he has the knowledge in his head, but he can't get his body started.''
Though he learned to say "da-da'' at age 1, just as his older sister, Heather, had, Rusty seldom spoke after that. Mary Brooke remembers clearly one time when he did. Heather and her friends were playing in the back yard, and Rusty, then about 5 years old, was watching out a window. "He turned to me,'' Brooke recalls, "and he said, 'Ma, I all alone.'
Rusty has always had poor muscle control--rubbery arms and weak wrists--a condition called hypotonia that is associated with autism. His feet turn out as he walks in his high-top Nikes, and he feels most comfortable--"safe,'' he says--sitting in a corner with his knees up, feet on the floor, his back supported on two sides.
School was basically a downward curve for Rusty. He was withdrawn, spending his days cowering in a corner of the classroom, totally unresponsive to his teachers. When he was 7, Rusty was placed in St. John's because the Fairfax system at that time believed it had little to offer him. St. John's emphasizes vocational training and communication, and is a place where, Rusty's mother says, even the janitors can speak in sign language. But Rusty did not learn to sign. He sometimes used picture boards, but, she says, "his evaluations compared to his age were beginning to drop.''
So when Brooke received an announcement in the mail about an October 1990 seminar in Syracuse on something called facilitated communication, she told her husband, Tom, an attorney at the Justice Department, "I better go see it.''
"I dragged myself to Syracuse, not really expecting a whole lot,'' says Mary Brooke. Biklen and several special education teachers played videotapes to demonstrate what they'd learned in the nine months they'd been using the method. The tapes electrified Mary Brooke. "There was a kid who looked and acted just like Rusty in one video, and he was in a 7th grade classroom in Syracuse with this facilitator and he was doing his science experiment and typing his answers. I came home afire.''
She pulled out the electric typewriter she'd had in college, sat Rusty down at it, supported his hand on hers, and absolutely nothing happened. A month later, a Fairfax County psychologist tested Rusty. The school system was reviewing his placement at St. John's, as it does every three years. He told the Brookes that their son was profoundly retarded. Mary Brooke thought about the videotapes--and began working with Rusty at the typewriter every day after school.
His breakthrough did not come for five months, until May 1991. With his index finger, he typed his name and answered simple questions. Then his mother asked, as she always did, if there was anything he wanted to say. She expected no response. But on this day he typed, "want yes rusty hewants to kiwaqq ftre to kikll that dog.'' Though the language was garbled, the message was clear. Rusty wanted to get rid of Frisky, the family beagle, whom his mother adored.
Mary Brooke was stunned. "That was kind of proof to me that this was Rusty typing. There's no way in the world I would have written that. He was just mad at the dog!''
After that, every day was something new. "It's been like someone from Mars arriving in our home,'' Brooke says. This fall, Rusty's new teacher at St. John's, Kathy Dawson, began using facilitated communication to teach him from the Fairfax County textbooks. Rusty still crouches in the corner, but he is doing 3rd grade level academic work, adding and subtracting three- and four-digit numbers in his head. "It blows all traditional teaching, all set ways of doing things, out of the water,'' Dawson says.
Pre-adolescent that he is, Rusty is also learning new ways to annoy his parents. He started swearing as his mother facilitated, so she decided it was time to enforce the family's "no swearing in the house'' rule. Heather, his 13-year-old sister, had always had to abide by the rules, but the Brookes had allowed Rusty to disregard them, believing he didn't understand. "Do not like,'' he protested, "but I wann to be a regular kid and i want to be like heather.'' Now he swears only while typing at school.
Dawson also introduced Rusty's best friend, Aaron Black, to the method. Rusty and Aaron, who is 10, are becoming interested in girls. When Dawson announced her engagement, Rusty asked his mother: Will I ever get married? Who will marry me?
"i like girs alot,'' he typed, "but i am too young tokdatem yet. i want to get married but iam too ugly to have a wife to have a wife,n i mmustnbe handsomejand hi am not.''
It is after 3 p.m. in classroom 210, and Brian, Graham, and Kristina have just left for their buses. Milam is sitting sideways at a desk piled with record books and teacher announcements, one white Avia sneaker crossed over the other, reflecting on the days before facilitated communication.
"When we first got these children in September 1990,'' she says, "Kristina often curled up in a ball on the floor and cried. Graham, any demand that was made on him, he would just squat down on the floor and throw things. Chairs. He liked to flip over chairs. He was a great kicker. Brian would just dance around the room and not respond at all, be totally withdrawn in his own world.''
These were the children on the old videotape--though Milam says that by the time the tape was shot, they actually had come a long way. Like most children with autism, Milam says, they lacked many self-care and adaptive skills. Only Brian was toilet trained. None of them could open a carton of milk, unwrap a straw, or go through the lunch line and eat without help. Milam taught hand-washing, buttoning, snapping, zipping, walking in line--she still does, but she says many of these skills "have improved because their attitudes have improved since we started facilitated communication.'' And, she adds, the kids are growing up.
Around the room are remnants of the former curriculum: The red, yellow, and blue waffle blocks the kids never take apart are used as stools; the Legos are here because Graham still likes to arrange them by color during Quiet Time; the Lincoln Logs are in the closet. When she and her assistant, Ann Merz, remember the way they used to teach, "We say, 'Gosh, these children were so great to put up with it.' They must have been bored to death.'' Milam would like to trade some of the toys to the school district for "some more advanced math software for Brian.''
On another afternoon in late March, Milam is presenting a lesson on money. She sits at the center of a half-moon table, her hands full of dollars and coins, while Kristina, Brian, and Graham face her. Merz moves around the table to sit next to each child to facilitate when called upon. In front of Milam is a record book where she charts each child's responses and the amount of hand and arm support she or Merz gives. "In the beginning,'' Milam says, "you have to support them so much you do question, 'Am I subconsciously influencing this?' But with both Ann and I facilitating, we could confirm responses with each other.'' In February, Milam began "fading back'' support in the hope that eventually the children will be able to type on their own. For some reason, touch--even a hand placed gently on the shoulder-- remains crucial in all but a few cases.
In math, the class has been working on making and recognizing correct change. Milam points out that autistic people are often good at math, but they have trouble applying the skills to real life. "Kristina,'' Milam says, "if you bought a pack of juice boxes and they cost $2.60 and you gave the cashier $3, how much change would you get?'' She lays out $3. In front of Kristina is a Wolf, a computer keyboard containing a voice synthesizer. Milam has programmed the Wolf to "speak'' answers to multiple-choice questions and math problems when the students push the buttons. Kristina fondles her black "Slime Thing'' sweatshirt and occasionally pokes at her luminous, light gray eyes. Merz lightly supports her forearm as she moves toward the key marked "40,'' then hovers over it. She presses it. "Forty,'' the computer announces, then "cents.'' "Good,'' Milam says. Kristina has only started doing math without wrist support. In Milam's view, this is not good enough. "Until they can do these problems with minimal facilitation--at the elbow, the shoulder--or independently, then I don't consider that they are verifiably functioning at this academic level,'' she says.
She moves on to Brian. "Definitely, only arm support for him,'' Milam says to Merz. "Okay, Brian, if you bought something in Virginia and it costs $3 and you know the tax in Virginia is four and a half percent, what would the total be? If you end up with a half a cent, you go up to the next cent.''
Brian puts out his right hand and Merz supports his arm very lightly, barely touching his right elbow. Milam begins scribbling with a pencil and paper, her freckled nose crinkling as she figures the answer to her problem. Brian moves his hand and with his index finger presses the "3,'' then "dollars,'' then "14'' and "cents.''
"That's right,'' she says. On the computer, Brian is already doing 4th grade fraction programs.
When it is Graham's turn, he strokes his sandy hair and bats at his big ears, then picks up the Wolf to read what is on the back of the keyboard. Tilting his head back, he squints over his nose, his eyes appear closed. "Graham, there is not much to read back there. Pay attention here,'' Milam says. "You went to McDonald's and you bought a pack of french fries, and included with the tax the french fries cost 78 cents. What's the change from a dollar?'' She lays out a dollar. Graham picks it up and squints over his nose at both sides of it, as though he were checking for counterfeit. As Merz supports his wrist, he quickly answers "22'' and "cents.''
"You know,'' Milam says to Merz, "we may have a problem with boring him.''
Graham is something of an enigma to Milam, the one child who feels infringed upon if asked to reveal too much about himself. One day, Milam wanted to know what he'd like to do for fun, uncertain that Graham knew what "fun'' was. Graham typed, "Teach me to read the operating manual for the Canon Communicator.''
Unlike Kristina and Brian, Graham has refused to "talk'' with his family at home. Milam knows that Graham's autism makes him resist any changes in his routine. So she hoped her recent innovation of daily "conversation,'' where two children talk with each other using Canon Communicators, might open him up.
"Youshould talk at home,'' Brian wrote to Graham during a recent conversation.
"Why?'' Graham asked.
Brian's answer said it all: "It willaopen doors for you.''