Facilitated communication: what parents should know.
Communication--the ability to express one's thoughts, ideas and wishes to another person--is a vital component of life. However, when a developmental difference, such as language delay, motor impairment, developmental delay or autism, interferes with communication, a child needs extra help.There are many approaches to enhancing a child's communication skills. Some children can benefit from speech therapy; others may learn to use gestures, signs or augmentative communication systems. In the last five years, facilitated communication has received publicity as a possible breakthrough in communication.
What is facilitated communication?
A six-year-old boy with autism sits in his classroom next to a teacher. Until recently, the boy was considered developmentally delayed. He cannot say any words but seems to understand a few spoken phrases. In front of the boy and his teacher is a piece of cardboard with the letters of the alphabet written on it. The teacher holds her hand gently around the child's hand; together they point to letters while the teacher says the letters and words aloud--"I... W-A-N-T... want... I want... S-T-R-A-W-B-E-R-R-Y... I-C-E-C-R-E-A-M... I want strawberry ice cream."
"Oh, you'll get it at lunch!" the teacher answers.
This technique of hand-over-hand spelling out of words is called facilitated communication (FC).
Australian educator Rosemary Crossley developed FC to help a woman with cerebral palsy communicate. Crossley began by using a hand-over-hand approach to help the woman, who had severe motor problems, indicate preferences by pointing to pictures. Crossley later expanded this technique to include the use of an alphabet board.
A few years later, Crossley began using FC with other students, including children and adults with autism and/or mental retardation. Although many of these individuals had not shown any previous evidence of verbal skills or literacy, through FC, they were reported to produce highly sophisicated communication.
In 1990, Douglas Biklen, a professor at Syracuse University in Syracuse, New York, observed Crossley and her students in Australia. He began writing about FC and teaching its use in this country.
Why is FC controversial?
The controversy surrounding FC has to do with authorship of the spelled-out sentences. Critics believe the facilitator determines the letters to which the nonverbal individual points. In fact, many studies have shown that the pointing was controlled by the facilitator. In virtually all, the facilitators were unaware of their influence, and were shocked and dismayed by the results.
One of the most powerful of these studies was conducted in 1992 at the O.D. Heck Developmental Center in Schenectady, New York. Douglas Wheeler and his colleagues intended for their study to prove to skeptics that FC was a valid form of communication for the individuals with autism in this program. The three-month study included hundreds of trials involving 12 individuals with autism and nine facilitators. The results were completely unexpected. Not only was there not one, single correct response, the incorrect responses showed overwhelming evidence of facilitator influence.
Defenders of FC argue that studies such as this one have been done in artificial circumstances, and, therefore, are not valid. However, no studies published in peer-reviewed journals have offered support for FC.
How could a facilitator make someone point to certain letters without being aware of it?
It is very possible to gently guide someone's hand to point to certain letters without being aware you are controlling their movements. This is like an imperceptible nudge made to a car's steering wheel as the driver thinks about making a turn.
It is natural for a facilitator to anticipate the next letter of a word-looking toward a likely letter and, without realizing it, subtly guiding the person's hand to that letter.
Does it really matter who controlls the pointing? If everyone believes the communication is coming from the child, and the child is doing so well, why does it matter?
Parents and teachers report that some children show improved behavior after FC is introduced. This may be due to the fact that when FC is used, other good things happen at the same time--the child gets a lot of positive, individual attention and close physical contact; he is often given more opportunity to express preferences, included in a greater variety of activities and treated with more respect. All of these good things can cause the child's behavior to improve, even if he or she isn't actually using FC to communicate.
If using FC only caused positive changes in the lives of children and their families, perhaps it would not matter who was controlling the pointing. But FC also poses serious risks:
* Non-preferred life changes. A facilitator may report that the child types requests that may not reflect the child's true desires. While misrepresentation of preferences regarding clothing or hairstyle may be harmless, FC messages have also led to changes in children's medical treatment and educational placement.
* False allegations of abuse. Even more serious is the fact that FC has resulted in a large number of sexual abuse allegations. When these communications are not coming from the child, and the allegations are false, the consequences can be tragic. In some cases, children have been removed from their homes. When these cases were investigated, it turned out that there was no abuse, and that the FC messages came from the facilitator.
* Elimination of effective communication methods. When a child begins using FC, his or her other forms of communication--gestures, signs or augmentative communication systems--are sometimes ignored. But if FC is not really the child's communications, these other forms of communication are vital for the child to be understood and to express his or her own, unique personality.
What is needed for someone to be able to communicate?
Communication is a very complex process involving a variety of intellectual, social, emotional and physical abilities. This process can pose challenges for many people with disabilities. For example, consider some steps a could might go through to obtain ice cream.
Step 1: The child must be able to think about eating ice cream, he must be able to imagine eating ice cream; even though he cannot see the ice cream. Imagining something one cannot see requires a certain level of intellectual sophistication.
Step 2: The child must understand that telling someone he wants ice cream will help him get ice cream! Understanding the necessity of directing communication to another person requires social understanding.
Step 3: The child must have a way to indicate what he wants--spoken words, sign language, written language, pictures, gestures or a specific behavior that those around him understand to mean "I want ice cream."
Communication can break down at any step. It is very important to find out where the problem occurs so we can add support to that part of the process.
For example, communication is affected when a child's thinking process is limited to what he or she can see (Step 1). In such cases, children can indicate preferences by being offered frequent, specific choices, such as a choice between ice cream and cookies.
For children with autism, a disorder affecting social interaction, communication often breaks down at Step 2. For example, a child may be aware that he wants ice cream (Step 1); he may even be able to say the words "I want ice cream" (Step 3); but he may not yet understand that he must direct that phrase to another person (Step 2).
Many children with autism develop unique ways of communicating that are easily understood by those who know them well. For example, one child with autism may recite a line from a television commercial for ice cream. Another may take someone's hand, lead that person to the refrigerator and look up at the freezer door. If a child's family, teachers and friends understand his or her individual ways of communicating, the child can communicate needs and desires. However, it is also important to try to teach more standard modes of communication.
Children with significant motor problems may not be able to physically form words, causing a breakdown at Step 3. For example, such a child may know he wants ice cream (Step 1), and know he needs to tell someone (Step 2), but he may not be able to make his mouth form the word in an understandable way (Step 3). Providing this child with augmentative methods of communicating--signs, gestures, a picture board or an alphabet board connected to a speech synthesizer--will allow him to communicate successfully.
An alphabet board or keyboard, as used in FC, can only address communication problems that occur at Step 3. It cannot fix problems at Step 1--the "thinking" part of the process, nor can it fix problems understanding the social use of communication (Step 2).
And FC can only help with problems at Step 3 if the child is able to spell words and sentences, but is not able to point or indicate letter choices independently However, any child with the ability to spell and write sentences, and the motor ability to guide an adult's hand to specific letters, has the potential to develop independent communication skills through augmentative communication. A child who does not have the thinking skills to write and spell, or the necessary social understanding for complex communication, would not be able to use FC, but may benefit from some form of augmentative communication.
At school they are using FC with my child. What should I do?
If your child's teachers, speech therapists or other professionals are using or suggesting the use of FC, we suggest the following steps:
* Consider whether the sentences produced, and the spelling and grammar abilities, are consistent with your child's abilities as you and professionals know them.
* If you believe your child is communicating successfully with FC, he or she is an excellent candidate to be able to quickly learn to use an advanced augmentative communication system. Recommend that the child be evaluated for this type of communication aid.
* If FC is being used and you believe the communication is being controlled by the facilitator, it is important to meet with your child's team and discuss your concerns. The communication methods used at school must be consistent with your child's IEP. If FC is not in your child's IEP, you should not have difficulty eliminating its use. The team should work with you to explore other communication methods.
* Most importantly, to einsure that your child is working with the most optimal communication methods, a thorough evaluation of your child's cognitive, social, motor and communication abilities can help the team understand and address any problems interfering with his or her ability to communicate. Such an evaluation can be done through the school, however, if there is disagreement about an optimal communication approach, you have the right to an independent evaluation paid for by the school once they have done their own evaluation. An independent evaluation can provide objective input regarding optimal communication approaches. EP
RELATED ARTICLE: An FC Nightmare
My husband and I were introduced to FC by a police detective, who told us our 13-year-old son son, Josh, had made allegations of sexual abuse against a family member. The detective gave us typed transcripts our son was supposed to have produced at school when "facilitated" by his teacher. We had no idea Josh's teachers were using FC with Josh, who has moderate mental retardation.
We took Josh for a physical. We felt somewhat reassured when the doctor reported no physical signs of sexual molestation. But that reassurance was soon to evaporate.
I asked Josh's teachers and therapists how he could communicate like this. "He can talk," I said, "but he cannot read, write or spell." They said they could not explain it, but that FC was a miraculous new 'thing" that unlocked hidden intelligence.
Although we were doubtful, we trusted these professionals. And we wanted to believe our son was intelligent enough to have taught himself to read, write and spell. We went along with their recommendation that Josh should continue using FC.
As months passed, it continued to be facilitated that Josh was being abused, was not protected by his family, or wanted to leave home to be safe. At one point, the police were called in to investigate claims he was making "plots and ploys to murder" his family.
I allowed the police to question Josh because they agreed to provide me with a videotape of the interview. It was heartrending to watch 43 minutes of Josh struggling with the facilitator, using spoken language to repeatedly say, "Can I stop now? Can I go back to the room? No, no, no! I don't want to do this." He repeatedly yanked his hand away from hers, turned the typewriter off and looked around the room while she "facilitated," concentrating intently on the keyboard. When an officer suggested that our son might want to stop, the facilitator repeated the FC lore--what he says isn't valid; just pay attention to what is typed. The investigation continued.
A few weeks later, Josh's grandfather was accused of sexual abuse. My involvement was implied by a facilitated statement about "the ploy by my mother to appear normal."
We were distraught. If our son had been abused by anyone, we certainly wanted to know, but none of this made sense. Josh had never spoken about anything remotely resembling sexual molestation. Yet his teacher claimed this communication was coming from him.
A final "facilitated" police interview resulted in a typed sheet describing specific graphic sex acts involving me. I was hysterical after reading the accusations. School personnel then said they were convinced that, although these were his words, Josh was lying. The detective in charge decided not to file any charges.
Despite that decision, I cried for weeks. I was terrified my child would be taken away from me, or that I might be arrested or forced to leave my home. I couldn't understand how the sweet, funny, talkative child I loved could have done this. Or why.
Then I discovered he didn't do it. We experimented with our own electric typewriter. I had believed Josh's hand could not be pushed to keys he didn't want to press, but I soon discovered that, holding his hand, I could spell whatever I wanted. If I looked away from the keyboard, the words turned to gibberish.
At our insistence, the school stopped using FC with Josh. His recovery from FC began the day he entered a new classroom. After months of having his spoken language ignored, he was finally being valued for himself again.
Some people call FC an inexpensive intervention. In fact, FC has enormous costs. We spent our life savings defending ourselves against false accusations. And we're not the only victims. FC has destroyed families, cost jobs, placed children and adults in homes with strangers ill-equipped to handle their needs, and undermined the credibility of professionals--who, despite the best of intentions--insist on ignoring the results of objective, scientific research.
Johnson, along with other parents, has formed a support group for families who feel they have been hurt by FC. The group provides information, copies of scientific research, articles, and videos examining FC. For more information, call (404) 973-4045.
This piece was adapted from The IARET Newsletter (Summer/Fall 1994). For more information, see "From Someone Who's Been There and Back," page 51.
RELATED ARTICLE: Speaking with Kimberly
When I began facilitating with my daughter, Kimberly, I would sometimes ask myself if she was really typing these words, or was I somehow moving her hand. To suddenly have one's daughter type long sentences when she rarely spoke one word, is an indescribable feeling. Was this the same seven-year-old child I thought only understood at the level of a three-year-old?
Yet, I knew in my heart these were her hand movements and not mine. Because of my own doubts, however, I understood when I heard "through the grapevine" that some professionals who had already worked with Kim thought I was the one doing the typing. But I had no reason to lie, and it hurt to hear that people thought I was making this up. It might have been a little easier had they expressed their disbelief directly to me--though not in front of Kimberly.
Now, more than three years later, I have no doubt that all the amazing things Kimberly types are her own words, and at least one of the original doubters has become a staunch supporter of Kimberly's abilities.
None of our friends ever thought we were lying about Kimberly's abilities. They trust me, and they know that as a mother of five children, I don't have time to go around pretending my daughter types. They know that I facilitate with Kimberly because she has something to say. Also, some of our friends now facilitate with her as well, so they know from personal experience that these are her words.
However, we still encounter professionals who doubt FC. About a year after she began using FC, Kimberly and I went to a conference where a speaker--an "expert" in the field of autism--spoke negatively about FC, even though he'd had no personal experience using the technique.
Since this speaker has never tried FC, his suspicions are understandable. However, it was not right for him to publicly criticize something he knows so little about, especially in front of an audience including many people whose children use FC.
Another time, we took our daughter to a neurologist because of her seizures. After being given a drug so she would fall asleep for an EEG, Kimberly, by facilitating with me, tried to tell the doctor how the drug made her feel. The neurologist immediately said, "Mom, what are you doing? She isn't even looking at that thing [her Canon communicator]." Although this person had never met Kimberly before that day, he was questioning her ability to communicate. It made me feel like he thought I was ignorant and that my daughter was not intelligent. The worse part was that he said this in front of Kimberly.
Professionals would do better to assume that all non-verbal or low-verbal individuals they encounter actually understand everything that is said. Even if these individuals are genuinely retarded, it certainly can't hurt to treat them as if they are not. And if they are intelligent and the "professional" treats them otherwise, it can damage their self-esteem. I believe many professionals reject FC because it would force them to admit the had been wrong about everything they have been taught or believed about the intelligence of those who cannot speak.
--Marilyn Dixon
Texas
RELATED ARTICLE: Facilitating Love
There have been times in the past that family and friends have denied that my seven-year-old son, Joshua, was really "talking" to us. They have accused us of putting ideas in his mind, of spelling what we want to hear and just making up the things that Joshua has told us. Regardless of what they say, or what the "experts" have said, I know that FC works for my son.
I remember the first day we learned Joshua could use FC--we were thrilled. Imagine being able to hold a two-way conversation with your child for the first time. Thank God someone came up with this form of communication, which has unlocked so many sealed doors for us.
Now, Joshua can tell me what he wants, how he feels and what he wants to do. But most of all, he says that he loves me. And this is something I will not let anyone take from me.
If you have not tried FC, or are skeptical about it, why not listen to your heart and give it a try with your child? Unless you find a speech therapist who is willing to try anything to help your child, you will find the going rough. But I encourage you to stick with it. If your child is able to use FC, you will certainly be rewarded.
--Lewis Johnson
Virginia
RELATED ARTICLE: From Someone Who's Been There and Back
I was the facilitator for a child with autism who, through facilitated communication (FC), made allegations of abuse against members of her family. I continue to struggle to understand how the use of this seemingly harmless technique could have caused so much pain to so many people.
I was introduced to FC by staff members in my school system. I had worked for five months with this particular child using traditional techniques, but I'd had little success obtaining reliable, verbal communication. Other staff members introduced the child to FC. After a few months, they reported an emergence of words.
By fall, the child was producing occasional sentences. At that time, I became her primary speech/language therapist and began to work more closely with her. Under the supervision of the other facilitators, I learned the technique.
The child resisted at first, but gradually began extending her hand to me when I sat beside her with the board. In structured, language-based activities, she began to respond in words, then phrases and, finally, sentences.
As her ability to use FC increased, the other two facilitators began to report "communications" from this child indicating anger and a desire to kill herself. Her "team" (composed of parents, teachers, administrators and special education staff) agreed that these feelings could be considered "normal" for someone who was able to communicate for the first time. No one questioned the validity of the communications.
By mid-winter, the other facilitators and I were using FC to have "spontaneous" conversations with this child. These conversations seemed to be student-initiated. Her "communications" often centered on feelings of anger and frustration. Eventually, she alleged that she was being hit by family members.
We agreed not to report our "findings" until we were sure of what we had. We continued documenting the conversations and watching for behavioral or physical changes. I feared for the child's safety and speculated on the conditions of her life at home.
Shortly thereafter, during a "spontaneous" conversation this child "stated" she was being abused by her father. The description was specific enough to warrant concern. We reported the findings to the Department of Human Services (DHS). During the three-hour interview with DHS, this child, through FC, graphically described events of sexual abuse. DHS authorities removed her and a sibling from their home.
DHS appointed a guardian ad litem (a lawyer hired by the state to protect the rights of the child) who arranged testing to find out if the communications were coming from this child.
In the meantime, I attended an FC workshop at a local university. As the workshop leader reviewed a "checklist" for facilitating correctly, I realized the child I was working with did not always look at the board. Although the workshop leader pronounced my technique "exactly right," I was concerned. I asked the leader and other "experts" if they had ever worked with students who did not look at the board. They all said they had, and that they believed their clients had memorized the board's layout.
I came away from that workshop even more convinced that FC worked. The workshop leaders acknowledged negative validation studies, but said those studies were flawed.
On the day of the childs FC test, I felt nervous, but confident the results would support the validity of her communication. This test included picture identification, story comprehension, hands-on activities and short-answer questions that she should have easily known. The child seemed to enjoy the activities, and I felt she was communicating in her usual way.
The results devastated me. Not one of her answers was correct. In fact, the picture-identification section clearly showed that "her" answers described the objects I had seen. The abuse charges were dropped.
A few weeks after the testing, I read those negative studies. I could no longer ignore the fact that the communications were coming from facilitators and not the clients. I convinced my employer to stop using FC.
Still, I carried guilt and shame for my role in bringing charges against this child's family. I knew I could not heal from the experience unless I apologized. A year later, I sat down and talked with the family. Although they were extremely hurt by the experience, her father told me they understood how I became involved. They had also wanted to believe in FC.
--Janyce L. Boynton
Maine
This piece was adapted from The IARET Newsletter (Summer/Fall 1994), published by the International Association for the Right to Effective Treatment IARE7). IARE-T (763 Main St., #10, Waltham, MA 02154-0604, 617/891-7554/voice and fax) is an educational and advocacy group helping to ensure that all individuals with disabilities "benefit from the most progressive, effective interventions possibble." Annual newsletter subscription is $9 for three issues.
RELATED ARTICLE: To learn more about FC...
* Facilitated Communication: The Clinical and Social Phenomenon, published in 1994 and edited by Howard C. Shane, Ph.D. of Children's Hospital in Boston, provides an up-to-date look at the what is currently known about FC. Topics include history, legal issues, research methodology and research results. Available from Exceptional Parent Library (800/535-191 0); $45.
The American Speech-Language-Hearing Association (ASHA) has issued a technical report on FC. The report was developed by a committee, which included both professionals and parents. The 47-page report, released in October 1994, provides a detailed overview of FC, with an appendix summarizing the methodology and results of every published research study on the subject. Also included is a four-page minority statement issued by two committee members who disagree with some conclusions of the technical report. These materials may be obtained by sending a self-addressed 12 x 9-inch envelope stamped with $1.93 in postage to ASHA, Information Resource Center, 10801 Rockville Pike, Rockville, MD 20852; (800) 638-8255 (VIM), (301) 897-7348 (fax).
Karen Levirw, Ph.D., is director of psychology at the University-Affiliated Program, Institute for Community Inclusion, Children's Hospital, Boston, Massachusetts. She is also an instructor at Harvard Medical School. Karen specializes in psychological consultation for children with autism, Williams syndrome and other developmental disabilities, and their families.
Robert Wharton, M.D., is chief of developmental pediatrics and rehabilitation at Spaulding Rehabilitation Hospital and chief of pediatric rehabilitation at Harvard Medical School. Dr. Wharton specializes in medical care and behavioral consultation for infants and children with complex medical problem, injuries and/or developmental disabilities.
 Printer friendly
 Cite/link
 Email
 Feedback
| |
| Author: | Levine, Karen; Wharton, Robert; Johnson, Cecilia; Dixon, Marilyn; Johnson, Lewis; Boynton, Janyce L. |
|---|---|
| Publication: | The Exceptional Parent |
| Date: | May 1, 1995 |
| Words: | 4361 |
| Previous Article: | Getting started with augmentative communication. |
| Next Article: | Using the telephone. |
| Topics: | |