By Jonathan Shikes
By Michael Roberts
By Jonathan Shikes
By Michael Roberts
By Michael Roberts
By Michael Roberts
By William Breathes
By Melanie Asmar
All eyes were on Mike Hoover. The 33-year-old autistic man had a typing machine propped in front of him and his mother at his side. The room was silent as Hoover reached his left arm toward his mother's right hand and pulled it to the keyboard. Leaving his thumb and pointer finger free, Donna Downing held her son's other fingers still. Slowly, Hoover punched one letter at a time.
Finished, Hoover pressed a button to play his words. "I have a mom who always believed I was smart even when I did not type," the machine read in the voice of "Dr. Dan," a male's deep tone.
Hoover was demonstrating facilitated communication, a technique that involves another person providing physical support for a user's hand, wrist or forearm so that he or she can type. Once touted as a miraculous way to give a voice to non-speaking people who lack the motor skills to point, it's been widely discredited by academics.
But Hoover doesn't care about professors who presume to know what it's like to be autistic. He is a founding member of Watch Our Words Colorado, established three years ago as a way for facilitated-communication users to get together and have discussions. Last year, the group of eight decided they wanted to do more than talk, so Hoover applied for a $25,000 grant from the Colorado Developmental Disabilities Council. That money has enabled WOW to host four training sessions over the past year, including the one at which Hoover was demonstrating, on September 16 at the Marriott hotel in Louisville.
Facilitated communication was created in the 1970s by Rosemary Crossley, an Australian teacher who believed that her cerebral-palsy-afflicted students were smarter than their physical disabilities allowed them to show. In the 1980s, she began using the technique on children with autism. In 1988, Douglas Biklen, then a special-education professor at Syracuse University and now dean of the school's education department, went to Australia to observe Crossley's students. By 1991, he'd established the Facilitated Communication Institute at Syracuse, and thousands of parents and teachers across the country began using the technique.
In 1992, two employees of Boulder's parks and recreation department -- who worked with Hoover and other people with autism -- attended one of Biklen's training workshops. Hoover, then twenty, had never been able to communicate except in isolated words; when his friends got back from the training, they asked him to type with them. He spelled out "Mike Hoover for President."
Soon, Hoover was able to tell his doctors about his migraines and inform his mother that he wanted to be baptized. He got his own apartment. He found new jobs. He attended leadership training. With his mother facilitating, he spoke at conferences. He was appointed to state and national boards, such as the National Autism Committee.
But not everyone was sold on facilitated communication. In 1993, Pat Wick, a Longmont speech-language pathologist, had an autistic student whose facilitator claimed he was reading at college level; when Wick quizzed the student without allowing the facilitator to see the questions, he couldn't answer correctly. Around the same time, Louis and Marie Stepanek's fourteen-year-old son, Bernie, was taken away by Delta County social services after he accused his father of sex abuse through facilitated communication. The county eventually abandoned the investigation, determining that the accusations had come through the facilitator and not Bernie himself; the ordeal cost the Stepaneks a hundred days of separation from their son and $30,000 in legal fees.
At least forty cases similar to the Stepaneks' popped up across the country in the early '90s. Again and again, research faulted the technique, finding it not unlike a Ouija board with the facilitator controlling the message. Eventually, the American Academy of Child and Adolescent Psychiatry, the American Academy of Pediatrics, the American Psychological Association and the American Speech and Hearing Association released position statements declaring that facilitated communication lacked scientific validity.
Despite the technique's controversial status, members of the Colorado Developmental Disabilities Council were eager to support Hoover's grant request. In 2000, the council had already passed a formal resolution supporting facilitated communication; and WOW member David Thompson is the son of the council's planner, Marna Ares. All council members are appointed by the governor, and the group -- which was formed in 1979 as a result of the Developmental Disabilities Assistance and Bill of Rights Act -- is funded through the federal Administration on Developmental Disabilities. (Hoover was added to the council late last year.)
"We fund cutting-edge projects to show conventional ways of thinking are not always the right way of thinking," says council chairman Ian Watlington, director of educational support for the ARC in Jefferson County.
WOW has shattered misconceptions about the abilities of a person with disabilities, council members say. Ares's son, 21-year-old Thompson, attends the University of Colorado at Denver and has passed a rigorous battery of classes; in fact, he was late for the training session at the Marriott because he was studying for exams. As his facilitator, Becky Johnson, explained to the group that she attends classes with Thompson and facilitates all his work, Thompson paced the room, flipping through magazines. When Thompson was asked a question, Johnson walked over to him, took away the magazine and sat him down in front of his laptop. Standing behind him, she held his limp right arm by the elbow to support his typing. His head bobbed and his eyes wandered around the room as Johnson stared intently at the keyboard, her arm muscles flexing from the shoulder down.
When told that it looked like she was controlling Thompson's arm, Johnson responded, "You can't feel the resistance."
Resistance is an important part of facilitated-communication training. It's the facilitator's job to pull back on his partner's hand, creating tension. "As soon as she touches a letter, you're going to pull back up," Brenda Granger, who's been doing the training under the WOW grant, instructed one pair. "Pull back to the middle so they can go either way. You need to get the feel for how hard people are going to push."
Never tell them "I'll just help you with the first letter," she added.
As she watched the training, Linda Rosa, executive director of Advocates for Children in Therapy and an outspoken critic of attachment therapy, let an occasional eye roll or exasperated laugh escape her. Afterward, she asked the WOW group if they would arrange a test to demonstrate facilitated communication's effectiveness to skeptics. She suggested that they send Thompson's facilitator out of the room while Rosa asked him a simple addition problem that would be easy for a man who'd passed calculus. The facilitator could then return to help him express the answer.
Rosa's idea was rejected. There would be test anxiety, she was told. A facilitator's presence was necessary for processing. "They claimed people coming to their trainings were quite satisfied with their success stories, and that I was the only one to ever question facilitated communication," Rosa says.
Dr. Bernard Rimland of the Autism Research Institute in San Diego is another outspoken critic of the therapy, even though he knows of one successful case -- and even though his own son is autistic. In a recently published paper, he said that seventy studies involving 500 mentally-handicapped individuals have shown overwhelmingly that if the facilitator does not know the question, the client cannot respond correctly. So Rimland finds it "absolutely shocking" that a group of facilitated-communication users have received government funding. "It's fraud," he says. "Not only is it fraud, it's dangerous. People's lives have been ruined because of this. It's just terrible. It's an awful shame that they're getting away with it. They should be exposed."
Although Hoover emphasizes the importance of not misusing facilitated communication, he insists he's never met someone who hasn't authored their own words. "I think I need to tell people who do not believe facilitated communication is real that they need to look at the lives of people who type and tell them to learn more about autism from the people who have it," he says. "I think I need them to get a life doing something helpful, not trying to stop people who need FC because of their narrow perceptions of truth."