On Nov. 27, 2007, just a few days after returning to school from Thanksgiving break, 14-year-old Aislinn Wendrow created a shock wave by saying her father had “banged” her. Aislinn didn’t say it, exactly; she typed it on the keyboard of a digital device with the help of Cynthia Scarsella, her facilitator and an employee of Michigan’s Walled Lake school district.
Scarsella reported Aislinn’s declaration to a resource teacher, who, in turn, called Michigan’s Department of Human Services.
Within hours, detectives from the West Bloomfield Township Police Department drove to the home of Thal and Julian Wendrow, Aislinn’s parents. They told Thal that Aislinn had accused her husband, a 52-year-old painting contractor, of sexually abusing their daughter.
Thal, then 44 and a research attorney for the local courts, explained to the detectives that Aislinn was severely autistic and unable to communicate verbally. Neither she nor her husband would ever abuse Aislinn or her brother, Ian, then 13, who had Asperger’s syndrome, she said.
In fact, they had long been vocal advocates for their children. When it came time for Aislinn to enter high school, the Wendrows insisted that the school provide facilitated communication, or FC, which involved having an employee support Aislinn’s wrist and help her type her thoughts onto a keypad.
Aislinn had used FC in junior high and made extraordinary progress. She had made new friends and, her parents reported to an autism message board, was “writing poetry, spending a lot of time on homework, learning how to take tests … blossoming.”
Hoping for a miracle?
The Wendrows hoped Aislinn would be like Sue Rubin. Once thought to be mentally retarded, Rubin had made seemingly miraculous advances with the help of her mother, who acted as her facilitator. While a student at California’s Whittier College, Rubin began a busy schedule of essay and article writing on behalf of autism causes. She made over 40 presentations to schools, social service organizations, disability rights groups, mostly arguing that people with great intelligence and abilities were locked inside autistic bodies.
She even wrote her own Oscar-nominated documentary “Autism is a World” via FC. It premiered in the spring of 2005 on CNN and Rubin became a bona fide celebrity. As always, her mother was by her side, holding her wrist, as Rubin typed out her inspiring stories.
In the same way news outlets were awed by Sue Rubin's tale, just last week the press seized on another miraculous story — or at least what seems to be a miracle, as told through facilitated communication.
Diagnosed as being “vegetative” after a car accident 23 years ago, Belgian Rom Houben suddenly began communicating through FC. He had not been “vegetative” at all, he told journalists, but was trapped in an unresponsive body “alone, lonely, frustrated but also blessed with my family.” His story simultaneously evoked both heart-warming triumph and the primal human fear of being buried alive in our own bodies.
Video: Doubts over ‘coma’ patient’s awakening Msnbc.com contributor and University of Pennsylvania bioethicist Arthur Caplan had doubts, though. After seeing video footage of Houben typing on a keypad with his hand cradled by a therapist, he described FC as “Ouija board stuff.”
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“There are many people with loved ones with whom they cannot communicate who wonder, ‘Is my family member or friend in there?’” Caplan said. “These are huge stakes.”
Indeed they are, for as the Wendrows discovered, the very communication technique they hoped would free their daughter was now being used to turn their lives into a nightmare.
Accusations grow more elaborate
On Nov. 29, with Scarsella facilitating, detectives asked Aislinn about what had happened. Based on the text she typed, the police concluded that she had indeed been sexually abused. What’s more, they believed her mother knew about it and did nothing.
"My dad gets me up, bangs me and then we eat breakfast, he puts his hands on my private parts mom knows and doesn’t say anything" the Detroit Free Press quoted Aislinn as telling police, the punctuation errors making her words seem even more urgent and scary.
Ian and Aislinn were placed into protective custody by court order. Ian was taken out of school, then driven 50 miles and placed in a foster home. The court appointed a guardian for the children. Police told the judge they thought Ian had sexually abused Aislinn, too, and that he had probably been abused himself.
On Dec. 5, Aislinn told an elaborate story about how her father and other relatives had come late at night to the house of a local rabbi where she had been staying by court order. They threatened her, she said, and told her they were going to ship her to South Africa where she wouldn’t be able to cause any more trouble.
The rabbi denied any such encounter. But Aislinn also warned detectives and Scarsella, the facilitator, that their lives might be in danger because her parents kept guns in the house.
The police had not found any guns when they searched the house, and the Wendrows claimed to have never owned one, but this alarming information prompted the police to act immediately. They arrested Thal and Julian.
Julian was placed in a holding cell where he spent four nights sleeping on the concrete floor. Thal was released on bond, but forbidden to see her children. Then Julian was moved into the general jail population. His bond was set at $250,000, which the couple couldn't afford. As a result, Julian remained in jail, frightened of other inmates, frightened of the 75 years hard time he faced as an accused child rapist.
Opening of minds
FC began its rise in 1977, when an Australian named Rosemary Crossley facilitated communication with Anne McDonald, a girl who had a severe case of cerebral palsy. Anne was 16. Her body was shrunken, her limbs contorted, but she seemed “socially responsive.” So Crossley took Anne’s arm and hand and began pointing to things in the room. Two years later, Anne hired a lawyer, sued the state of Victoria, won her release from state care, and attended college.
FC, or some version of it, had been tried in the 1960s, when facilitators moved the hands of mentally impaired — usually severely autistic — people while writing on sheets of paper. Results from those early experiments, and Crossley’s experience with Anne, convinced some that many people had been wrongly diagnosed as unable to communicate or intellectually bereft. It wasn’t that such people could not communicate, they argued; they just needed help to do so.
It was a hopeful message, and one that carried much implicit guilt — for if there were poets, and screenwriters, and college students trapped in those bodies, the world had been doing them a great disservice. In 1986, Crossley started DEAL, a center for people with communication impairment. She expected mostly cerebral palsy patients, partly because many people with cerebral palsy have normal intelligence but some are unable to communicate easily due to their spastic condition.
Instead, most of DEAL’s clients had been diagnosed as mentally disabled or autistic.
In 1989, Syracuse University education professor Douglas Biklen journeyed to Australia and spent a month at DEAL. He returned to write an article for the Harvard Education Review called “Communication Unbound: Autism and Praxis” that described the sometimes miraculous opening of minds that occurred with FC. Parents rejoiced that a path inside their severely autistic, non-verbal children’s heads had been found. Almost overnight, FC clinics and centers sprang up over North America, including the Facilitated Communication Institute at Syracuse, still considered the Vatican of FC.
A minor industry bloomed. Japanese electronics giant Canon sold a device called the “Communicator” for about $1,000. One Wisconsin company, Crestwood, marketed the Canons and its own branded Crestalk device in ads featuring “Mickey,” an 18-year-old autistic man using “the very latest technique called ‘Facilitated Communication.’” The caption below the picture of Mickey and his teacher using the device said “I LIKE DAVE FRIEND.”
Biklen’s Institute went into business, too. Syracuse began receiving grants so the Institute could research and teach FC.
No interest in hard questions
About two hours away, in Schenectady, N.Y., the coordinator of the autism program at the O.D. Heck Developmental Center was skeptical. But his staff members swore by it, and as they were skilled and caring people, psychologist Doug Wheeler decided not to challenge them.
Nobody, it seemed, had any interest in asking hard questions.
But then some of the messages the autistic patients were typing startled the Heck Center’s staff. Some of the typed messages, for example, would have triggered invasive diagnostic procedures, such as exploratory surgeries or biopsies. Wheeler decided that, despite the faith of the staff who were using FC, the technique called for verification before major decisions were made based on the messages.
When Wheeler searched the available journal literature, he found nothing other than Biklen’s article. He decided to conduct his own experiments with a view toward proving to skeptical members of the staff that FC really was a breakthrough.
Wheeler designed an experiment using facilitator/student pairs that had used FC effectively. “Students would be shown simple photographs of common familiar objects and asked to name or describe them,” Wheeler later recalled. “The facilitators would be ‘blind’ to the pictures by use of a three foot high divider running down the length of a table. The divider would end at the far end of the table in a ‘T,’ allowing pictures to be hung on each side. The facilitator could not see the student’s picture and the student could not see the facilitator’s picture
Over a period of three months and 180 trials with 12 students and nine facilitators, FC didn’t work, not once.
Since Wheeler's experiment failed, what had accounted for the way words had poured out of the autistic clients of the Heck Center after FC was introduced? Wheeler’s trial, and subsequent research by others, suggested that facilitators were unconsciously guiding the hands of the patients. They were so heavily invested in what promised to be a breakthrough in the way autistic people lived, they had become blind to their own role in the communication.
“I wanted so hard to believe that it was real, that I wasn’t able to listen to objective thinking about it,” one of the Heck facilitators told the PBS investigative series Frontline in 1993. “It grabs you emotionally right here and once you’re hooked, I mean, you are hooked.”
True believers refused to give up. One expert insisted FC required “faith.” Some parents and FC advocates excoriated Wheeler. But he was also startled to receive calls from all over the world, from fathers in jail, from mothers whose children had been taken away, after charges of abuse had been leveled through FC messages.
Abuse charges were remarkably frequent. In 1995, the New York Commission on Quality of Care and Advocacy for Persons with Disabilities reported that over three years it had received 21 allegations of abuse — often sexual in nature — via FC messages. Just one case was considered “confirmed.” The rest were tossed because there was no evidence or because it was simply impossible for the abuse to have occurred.
Despite studies, despite the court cases, many people still defend the use of FC. Today, “The Communicator,” the newsletter for advocates of FC published by the Autism National Committee, is filled with the eloquent stories of people with autism who say they have been freed thanks to FC.
“Not only the label of being retarded was removed, the label of having intelligence was attached,” one wrote of FC’s effect in the Winter 2009 issue. “My life was open from the dark hell I was attached to and the opportunity this miracle gave me, and is still giving me, is overwhelming.” There are stories of graduating from college alongside “neurotypic” — the autistic community’s term for the non-autistic — peers thanks to the work of parents who do the facilitating.
The committee itself “criticizes attempts to dismiss FC on the basis of studies that are poorly designed and/or whose results are incorrectly extrapolated to the entire population of FC users. In particular, we reject overgeneralized claims that allege or imply that merely because FC is not valid for some people under some circumstances, FC is not valid for any person under any circumstances.” To deny FC, they say, is to deny a basic human right.
Douglas Biklen still argues on behalf of FC. His institute still exists and receives hundreds of thousands of dollars from charitable foundations.
FC put on trial
On Jan. 28 and 29, 2008, Judge Marc Barron held a hearing to determine the accuracy of facilitated communication so that it could be used when Aislinn testified in the coming hearings and her father’s trial. Barron ordered that Scarsella leave the room when Aislinn was asked a question. After the question had been posed, Scarsella could return and facilitate Aislinn’s answer on the keyboard.
“Do you have a brother or a sister?” Aislinn was asked.
“3FE65,” she answered.
Could she clarify that answer?
“What color is your sweater?”
Belief is a stubborn thing. There were plenty of signs that Aislinn’s supposed accusations against her father were never valid. In early interviews with police she was unable to name her dog or her grandmother, facts Scarsella didn’t know.
With Aislinn's FC being the only evidence that abuse had occurred, the charges were dropped. On Feb. 22, 2008, after 80 days in jail, Julian Wendrow was released.
The police said they still feared for the children.
“We’ve got the scarlet letter,” Julian told msnbc.com. “Some people will still look at us and think I raped my child.”
The family has been reunited, but the damage has been severe. The Wendrows, who are now suing Scarsella and a variety of officials involved in their case, spent an estimated $60,000 on their defense, money they can’t afford because Thal lost her job.
The Wendrows suspect the case precipitated her firing. She’s been unable to find another. They fear their house might be foreclosed upon in February.
They no longer use FC for Aislinn. Instead, they talk to her, touch her, hope they're reaching her.
Yet, the Wendrows are still reluctant to completely deny FC's validity. After all, there was that time in junior high and Aislinn’s “blossoming.”
“My daughter seemed happy,” Julian said.
Brian Alexander, a frequent contributor to msnbc.com, is the author of "Rapture: A Raucous Tour of Cloning, Transhumanism, and the New Era of Immortality" and “America Unzipped: In Search of Sex and Satisfaction."
© 2013 msnbc.com