28 Feb Parents Want to Give Their Autistic Children a Voice in Schools, but Scientists Call Their Technique ‘False Hope’February 28, 2017
By: Michael Alison Chandler
Source: The Washington Post
In a science class at Lakelands Park Middle School, 13-year-old Mike Keller sat between his professional aide and his science partner during a lesson about how force affects balance. The Montgomery County teen, who has autism, stood up a few times in a burst of energy and once walked out of the room. But with some redirection from his aide, he appeared to focus on a series of questions that his teacher posted on the whiteboard.
His teacher asked him an easy yes-or-no question at one point, and as an aide held a keyboard in front of him, Mike typed the word “Yes” on the iPad, followed by a touch of sarcasm: “Duh.”
Mike is not able to speak. He points at letters on a laminated alphabet board or types on a keyboard that an aide holds. Nationally, most students who can’t talk are in self-contained classrooms or autism programs or, like Mike used to be, in a separate school for students with severe disabilities.
But five years ago, Mike and his mother traveled to Texas to explore a novel communication technique called Rapid Prompting Method that led to what his family describes as a breakthrough. About a year later, he joined a new pilot program in Montgomery County Public Schools for autistic students who rely on keyboards and communication partners.
Montgomery County is unusual, if not unique, in creating such a program. Many schools have denied similar requests for programs that allow rapid prompting, or a similar technique known as facilitated communication that was widely discredited by the scientific community in the 1990s.
A generation later, there is a resurgence of nonspeaking students who type to communicate and rely on a communication partner through various techniques. Active communities of “typers” are growing in Southern California, Michigan, Boston, Atlanta and the D.C. region, areas where families have access to private training. As their numbers grow, more families are pushing for their children to be included in public schools.
In an autism world with few documented treatments and many high-cost promises, the use of these techniques has stirred strong emotions. Critics say they offer false hope to desperate families, while advocates argue that they help some people and that it is wrong to stop exploring the only means some may have of communicating.
In Arlington, Va., the Autistic Self Advocacy Network filed a discrimination complaint last spring with the Justice Department on behalf of five nonspeaking students — dubbed the “Arlington Five” — whose requests to use letter boards and trained communication supporters to access general education were denied by the school district.
By denying students their “preferred communication method,” the complaint stated, they are being “prevented from communicating their thoughts, ideas, and feelings,” and “being consigned to an inferior education with fewer opportunities and lower expectations.”
Brenda Wilks, an assistant superintendent overseeing special education for the Arlington County schools, said in a statement that the district “will continue to explore best practices and educational research in this area as we evaluate the use and potential benefit of [Rapid Prompting Method] and other related methodologies to support our students.”
Critics point to research that indicates the techniques are not effective.
In response to an international resurgence in the use of facilitated communication, Ralf W. Schlosser, a professor of communication sciences and disorders at Northeastern University, led a systematic review in 2014 of more than 20 studies of the technique. It found overwhelming support that the facilitator was controlling the message.
“In the field of augmentative communication, we want to empower people with disabilities to speak their own minds, so if someone else is speaking, that is a big problem,” he said.
But advocates question some of the research methodologies and say better training and newer techniques, including rapid prompting, offer safeguards against facilitator influence.
Underlying the debate, some maintain, is a fundamental civil rights question.
“When Helen Keller first learned to communicate, no one believed her,” said Vikram Jaswal, a University of Virginia psychologist who has an elementary-aged daughter with autism who he said is learning to spell to communicate. “We routinely segregate people who can’t talk. Why do we assume they can’t learn?”
First developed in Australia, facilitated communication was introduced in the United States in 1990 when Douglas Biklen, a Syracuse University education professor, wrote about it for the Harvard Education Review.
It was embraced enthusiastically as a miracle technique that could unlock the potential of people who had been written off as very low functioning. There were media reports of people previously thought to be mentally retarded graduating from high school or writing lyrical poetry.
In facilitated communication, a trained facilitator helps the nonverbal person type by supporting their arm, wrist or hand. It is based on the theory that autism has a significant motor component, and many have difficulty with intentional movement and so need physical support to demonstrate what they know.
Syracuse established an Institute for Facilitated Communication and trained thousands of facilitators, many of them public school educators, from across the country.
Its downfall was swift and steep. A series of controlled studies in the 1990s found strong evidence that the communication was extremely susceptible to facilitator influence. In so-called message passing tests, when the subject was asked about something that the facilitator could not know, the responses were routinely inaccurate. Researchers found that facilitators were unaware they were influencing the response.
At the same time, in dozens of cases, nonverbal people made accusations of sexual assault through their facilitators. Some highly publicized allegations involved a parent or family member. Judges found these claims to be false, and the facilitated messages unreliable.
By 1994, the American Psychological Association adopted a position statement opposing the use of facilitated communication. Other professional organizations followed suit.
Public schools, for the most part, closed their doors tight to the practice.
The center at Syracuse never closed, although it changed its name to the Institute on Communication and Inclusion. And Christine Ashby, its director, said that interest in facilitated communication did not go away and has increased in recent years.
A handful of school districts — including those in Syracuse, N.Y., Barre, Vt., and Whittier, Calif. — have trained teachers and supported students over time, Ashby said. But most considered each case individually and provided services quietly.
The institute promotes standards of practice designed to reduce the chance for facilitator influence, including providing the least amount of physical support possible, and training typers to work with multiple facilitators, Ashby said.
“It grew too fast, without the right procedures in place, and a lot of poorly trained facilitators,” she said.
At the same time, rapid prompting, which is not taught at the Syracuse institute, has gained traction among nonspeaking people with autism.
The approach was popularized in the United States by Soma Mukhopadhyay, a chemist by training from India who dedicated her life to educating her autistic son.
Practitioners say the approach is fundamentally different from facilitated communication because, in rapid prompting, an aide typically holds a keyboard but does not touch the person typing.
The process involves using verbal encouragement and tactile stimulation derived from having someone hold the board. Such prompts are supposed to help the person initiate movement and stay focused on typing despite sensory distractions.
There is very little research on rapid prompting, in part because Mukhopadhyay has resisted participating in studies.
Critics say this method is also highly susceptible to facilitator influence. They describe it as a process of learning to respond to increasingly subtle cues.
Howard Shane, director of the Center for Communication Enhancement and the Autism Language Program at Boston Children’s Hospital, questioned the validity of any communication method that requires the physical help of someone else.
“We have five different ways of controlling a computer with your eyes,” he said. “We can most of the time find some way for them to communicate independently.”
Shane said he has seen nonverbal autistic people create full sentences independently but has never seen high levels of intellect suddenly unlocked.
Matthew Belmonte, a neuroscientist at Nottingham Trent University in Britain and a visiting researcher at a Bangalore clinic that teaches communication techniques similar to rapid prompting, said the method’s theoretical underpinnings are sound and some nonspeaking people with motor impairments can potentially benefit.
Research is needed, he said, to ascertain whether, for whom and in what contexts the technique works, and to improve and automate the process.
“We have to be very careful if we are denying the veracity of potentially the only means of communication that some people have,” he said.
In the decade after her son’s autism diagnosis, Lori Mitchell-Keller spent untold hours pursuing treatments.
“I can count on one hand the things that worked,” she said.
Then in 2012, she learned about Mukhopadhyay, who teaches her method to a growing list of families from an office in Austin.
Mitchell-Keller arranged for Mike to take lessons from her over the course of a week.
The results astonished her, she said. It appeared to her that Mike not only knew how to read and spell but that he also had been comprehending far more than they had imagined.
“I realized he had been paying attention, he had been there all along,” she said. Back at home, their family transformed as they got to know a boy who, his mother said, is bright, spiritual and affectionate.
Mike joined the Montgomery pilot program and enrolled in typical fifth-grade classes. The program started in fall 2013 with five boys, some using facilitated communication and some using rapid prompting.
A few more students have been added since, but the program will remain small without further evidence of the effectiveness of the techniques, said special education director Philip Lynch.
Officials are monitoring the students for progress toward independent communication, as well as social and emotional progress, Lynch said. He noted that Mike had made friends at his school and said: “How do you measure the impact of being included in your public school?”
After four years of practice, Mitchell-Keller said her son is making progress toward fully independent communication. He is now able to type without someone holding the keyboard, although the process tires him much more quickly, she said.
On a late November afternoon, Mike sat with the keyboard on the kitchen table in front of him and answered a few questions from a reporter about his Thanksgiving.
“My thanksngi mm. was golden,” he typed.
“my cousin Theo” visited and “really had great trimester here,” he wrote, with auto correct filling in the word “trimester.” “HE IS FROM. MINNESOTAN,” he wrote.
He yawned widely while he slowly typed the letters and hit the backspace key and typed again.
Mitchell-Keller, who travels extensively for work, said her son has worked with dozens of communication partners. When she is with him, she usually holds the keyboard, but this time she sat next to him without touching it. She reminded him to sit up straight, and she read the letters he typed aloud and encouraged him to keep going. She kept one hand on the edge of the table or underneath it. With the other, she held the tip of his collar between her forefinger and thumb.
“I am not even sure he feels it. I am not touching his skin, but I think it gives him a level of reassurance,” she said. “He’s not all on his own. There’s a lifeline there.”