Communication is one of my son Charlie‘s biggest challenges. He can talk a little, but mostly to ask for things; he says some words over and over (“Barney video”) that have specific meanings that my husband and I know, as we’ve spent so much time with him. Charlie’s had years of speech and other therapies and the fact that he can talk a little is a huge thing. Certainly it would be something to find out what Charlie is thinking.
While at a conference a few years ago, I met someone who did Facilitated Communication (FC), in which a facilitator “supports” the hand of an autistic person over a keyboard. Through this method, severely, non-verbal autistic children have reportedly been able to write poetry and described their career ambitions, and much more. On hearing about Charlie, the woman whom I met said she could hardly wait to meet him and that she could tell, based on what I said, that he had so much locked up inside of him.
While my husband and I are quite sure that Charlie, even with the speech and cognitive delays that his teachers and therapists and we have patiently addressed, is aware of much more than he might seem to be, we have long been wary of notions that there’s some “hidden person” locked up inside of him. Though we’ve never had what people would call a proper conversation with Charlie, we know our boy very well from hours spent biking, running after, sitting by, caring for him. Charlie may not use a lot of words, but he tries hard to communicate and it’s our task to figure out his meaning.
But FC, especially the facilitator’s facilitating by “supporting” — holding up — the hand of an autistic child, has seemed to promise more than it ought. FC has been in the news recently in a series in the Detroit Free Press about a terrible case in which a 14-year-old autistic girl typed that her father had sexually abused her, after which both parents, Julian and Thal Wendrow, were arrested and their daughter and son with Asperger’s Syndrome placed in foster care. The daughter had been taught to use FC by Dr. Sandra McClennen, a retired education professor from Eastern Michigan University — the woman I had met at the conference — in 2004. The Wendrows had insisted that their daughter use FC at her public school in Michigan, says the Detroit Free Press:
Beginning in middle school, they pushed FC, threatening to sue the school district if it didn’t hire a full-time aide to facilitate their daughter. They requested that she be placed in mainstream classes. On her own, the girl couldn’t match the word “cat” to a picture of a cat, draw a circle or count to five.
But when she used FC, the results seemed astounding. With a facilitator guiding her arm, the child who had never been taught to read was suddenly writing poetry and English essays, taking history exams and doing algebra. The middle-schooler who couldn’t put on her coat without help was typing about her plans to become a college professor.
Walled Lake schools officials were skeptical. The head of special services later described FC as “hokey.” A school psychologist who tested the girl’s IQ using a facilitator warned in a report that “the results should not be deemed valid or reliable” because the girl was not typing independently.
Cynthia Scarsella, an $18-per-hour teachers aide, was the girl’s facilitator, the one guiding her hand. She had been assigned to the job at the beginning of the fall 2007 semester.
Scarsella, who holds a high school diploma, completed one hour of facilitator training the summer before. She said in a deposition that she had “no idea” whether what the girl was typing was true and had no interest in trying to verify it. And she said she didn’t know anything about autism.
Scarsella was the facilitator who, after Thanksgiving weekend of 2007, held the girl’s hand over a specialized keyboard and saw her type “My dad gets me up banges me and then we have breakfast. … He puts his hands on my private parts.” The Wendrows had been arrested and jailed within a week, says the Detroit Free Press; they would be separated from their children for 106 days, until the case was dropped due to lack of evidence. The Wendrows filed a federal lawsuit against police, prosecutors and the Walled Lake school district; the police have settled for $1.8 million.
In an evidentiary heading,McClennen testified that the girl
“..has never been very good at accurately conveying information about past events.There’s, like I said, a lot of room for (the aide’s) influence, and we have to constantly worry about that.”
McClennen asked for a “naïve facilitator — one who hadn’t heard the allegations before” to test the girl but prosecutors refused. Instead, prosecutors asked the girl questions without the school facilitator present and then had the facilitator return to help the girl type; the girl’s answers to questions such as “Do you have a brother or sister, and if so, what is his or her name?” were nonsensical (her answer to the question noted was “3FE65.”)
Time magazine sees the Wendrows’ ordeal as a cautionary tale about “the side effects’ of nondrug therapies,” of therapies that have yet to stand up to scientific scrutiny but offer “nothing but hope.” To me, the Wendrows’ case says reams about how much hope parents of autistic children (my husband and myself included) have. It’s painful — stomach-wrenching — to think that the very therapy they had insisted that school officials make sure their daughter used in school, FC, became the reason for their being falsely accused of terrible crimes. Sometimes a therapy can have too good results.
Even hope can have its dangers.
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Photo by Sarah G.