START A PETITION 25,136,189 members: the world's largest community for good
START A PETITION
x
757,438 people care about Education

A Cautionary Tale: Autism, FC, False Allegations of Abuse

A Cautionary Tale: Autism, FC, False Allegations of Abuse

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.

More about the Wendrows’ case can be read in The State vs. Autism Families at Autism Key.

 

Related Care2 Coverage

Autism and Alternative Medicine: The Case of Lupron

Disabled Children Abused and Beaten in State Institutions

Understanding Autism: Causes, Genes, Brain Function, Symmetry

 

Photo by Sarah G.

Read more: , , , , , , , ,

have you shared this story yet?

some of the best people we know are doing it

21 comments

+ add your own
10:19AM PDT on Apr 21, 2014

And - FC has been an effective method for many people, some of whom began to type with significant physical support and gradually have had that support "faded" (as those who have developed FC methodologies advocate and train their facilitators to do) to the point that those individuals no longer need any physical support whatsoever.

Certainly not everyone can use FC effectively as a methodology. But its abuse by some does not make it invalid -- just as it is also possible to convince people who speak to recollect things that did not happen, whether by intimidation or by suggestion.

Christina, I also object to the "trapped inside" rhetoric. My daughter uses FC and who still needs significant support but who now works with several people (some of whom were initially skeptical of her "typing agency" but now recognize that her difficulties in accuracy stem from motor control rather than from lack of agency) and with greater accuracy and less support than at first. She may eventually type independently, and that would be good because it would make it harder for naysayers to question her agency and competence to express her own perspective. But even if she never does, I will continue to object to those who would characterize FC as a failed or "false" system just because it can be abused, because in my mind it's equivalent to the "welfare queen" myth that conservatives use to attempt to discredit the value of social assistance for the poor.

10:39AM PDT on Sep 5, 2011

Supporting or guiding? Everything has its pros and cons. Thanks for another great article.

1:17PM PDT on Jul 2, 2011

This is certainly strange.

5:43AM PDT on Jun 30, 2011

as mean as it sounds, I don't know how well a severly autistic person can teach. Like Charlie here. Sure there is that Downsyndrom woman, but that is not the same.

if someone is that nonverbal and in their own world, and has things that would make one assume they have an overkill GAD.

Was Temple Gradin this bad? I never read her book or watched her biography movie

4:56AM PDT on Jun 29, 2011

Thanks for the article.

8:58PM PDT on Jun 28, 2011

Huh?

8:08PM PDT on Jun 28, 2011

Too scientifically unsupported to judge.

7:47PM PDT on Jun 28, 2011

I agree with Elsie. All through the article, I kept thinking, "like a ouija board".

7:42PM PDT on Jun 28, 2011

she could have been truthfull. perhaps no one thought this would work and so they didn't worry bout it. it is best to beleive a child till you can prove otherwise.

9:23AM PDT on Jun 28, 2011

This is a message for Kristina C since I do not know how to contact you any other way. The New York Asian Film Festival 2011 in Lincoln Center in New York City is having a Chinese fiction film with English subtitles about a father trying to teach independent living to his 21 year old autistic son. The director of the film worked with autistic kids for 15 years. The times of the film which is called Ocean Heaven are Friday July 8 at 6:45 p.m. and Thursday July 7 at l:15 p.m.Although this is not confirmed yet they are working to get the director to at least one of the screenings (when the Walter Reade Theater does this they provide a translator if the person interviewed does not speak English). I would suggest buying tickets in advance. See the Film Society of Lincoln Center's website for more info.

add your comment



Disclaimer: The views expressed above are solely those of the author and may not reflect those of
Care2, Inc., its employees or advertisers.

ads keep care2 free

meet our writers

Kristina Chew Kristina Chew teaches ancient Greek, Latin and Classics at Saint Peter's University in New Jersey.... more
Story idea? Want to blog? Contact the editors!
ads keep care2 free



Select names from your address book   |   Help
   

We hate spam. We do not sell or share the email addresses you provide.