Facilitated
Communication – The Key to Success for a Non-verbal Person with Autism
Autism
Society of America
Hello. My name is Sue Rubin and I am glad to be here today to tell you about my life and facilitated communication. Typing is very slow so I have prepared my talk at home. When my facilitator has finished reading it, I will answer questions so you can see how I type to communicate. I know many of you may have read that facilitated communication is a hoax and that the facilitator was the person communicating. I hope this story of my life will change your mind. We people who use facilitated communication all have interesting stories and mine is just one of many.
The story I am about to tell you sounds fantastic, but I can assure you it is true. I can also assure you that many people with autism who use FC are also having life-changing experiences. My own story starts with a very autistic child who was quite aggressive toward others – biting, pulling hair, throwing my head against someone’s body, etc. I was also self-abusive – head banging, throwing myself against walls, biting, and quite ready to throw myself on the ground. I was so autistic I was in a separate world. When I was four my IQ was 50, but as I got older it went down so by the time I was 13 it was 24. When I took these tests I was totally unaware of what was expected of me. The tester spoke to me but she quite sadly could have been speaking a foreign language. Sounds always went over my head and I definitely wasn’t able to complete any tests. Fortunately, we no longer have to depend on IQ tests when we want to see how smart a person is.
From the time I was an infant until I was in high school, I went to severely handicapped special education classes on regular school sites and was mainstreamed into regular science and other classes. The intention was social but I was also exposed to grade level curriculum. My own special education curriculum was functional because no one thought an academic curriculum would be useful or even possible for me. Not only did I have horrendous behavioral problems and lack of language, I was awash in autism and totally dependent on behavior modification to get me through the day. The speech therapists tried everything they knew to get a communication system working for me. I couldn’t even use a system based on pictures because I couldn’t point or select pictures properly. Behavior was my only method of communication and that got pretty ugly sometimes. Whittier was always in the forefront of special education and I don’t want you to think I had an awful educational program. We lived behavioral mod and positive behavioral supports. We practiced finding antecedents, behavior and consequences. My school records are loaded with functional analyses. However, I was still a mess.
In 1991 when I was thirteen and in an eighth grade severely handicapped class, the school psychologist and speech therapist contacted my mom and suggested trying facilitated communication with me. My mom had heard about the ouija board affect and had read negative things about FC. She said she didn’t want them to try it, but they were so persistent, she agreed and they came to my house. I was as amazed as they were when I could spell parts of words with someone pulling back on my wrist. The speech therapist was successful with all of the students in my SH class, as was the classroom teacher. The teacher typed with me at school everyday and my mom typed with me at home. I slowly progressed from single words to phrases and sentences and paragraphs. During this time it became apparent that I had been learning from the mainstream classes and my older brother’s homework, and storing the information in my head. My brain was so disorganized it took months for me to be able to organize information and retrieve it. It took even longer for me to be able to clearly express original thoughts, not just short answers to homework.
When the year was over, we decided I should go to Whittier high school where they already had a full inclusion program. The difference now was that I would be taking academic classes toward a regular diploma. We chose honors and advanced placement classes to avoid taking classes with a lot of cooperative learning and behavior problems of non special ed students. We started with three classes and worked up to five classes each day. The transition to high school was very difficult for me and I often had to be removed from class. The psychologist was on call and often rushed to the high school when I was having a melt down. I really believe that being in regular classes and having to spend hours doing homework everyday and on the weekends was what enabled me to overcome a lot of the autistic behaviors I was constantly battling. After a while it became easier and easier for me to stay in class. I became relaxed and spent less energy fighting autism.
By the time I graduated high school I was a thinking person. I was sadly still autistic but no longer living in a separate world. I was quite aware of current events and aware of the thoughts and feelings of my peers and family. Because I was doing grade level work with few accommodations, and earned a high school diploma with honors, I was able to apply to college. With a 3.98 GPA and 1370 on my SAT’s I was accepted to Whittier College, a private, small, liberal arts college quite close to home. Today I am a junior and a history major. Because I only take one or two classes each semester it will take me several more years to graduate. I love learning and have thoroughly enjoyed my classes. The professors have been wonderful and enjoy having me in class. Both professors I have had and others who have heard about me have asked me to take their classes. They like me because I always am prepared for class and participate a lot with ideas a little different from most students.
When
I graduated high school I wanted to leave home like my brother did, so my parents
bought me a house near campus where I live with support from an adult
agency. My support staff at school and
at home are all people my age who have been taught facilitated
communication. When I am at school or
in the community, I type without physical support, but still need a facilitator
to keep me focused. Of course, at
school, the facilitator also takes notes for me and serves as a study partner
when I am preparing for tests. The only
accommodation I have is extra time on papers and tests. I have been doing well at school and have an
A- average and was recently inducted into Phi Alpha Theta, International honor
society in history.
This is not as fantastic or unusual as it might seem when you realize that I am the product of a school district that includes FC as an Augmentative and Adaptive Communication (AAC) method when assessing a student’s needs. In Whittier we have about 100 students with various labels doing grade level work using FC. In the adult world we have at least 30 people in the agency that supports me using FC everyday in colleges, home or the community. Other agencies in the Whittier area also use FC for their non-verbal and limited verbal consumers
I certain don’t want you to think that the only success I have had is academic. Facilitated communication has enabled me to form friendships with my staff who are my peers. I now am able to nominate who will be a friend and who will remain just a staff member. I interview potential staff members and decide who I will have WAPADH, the adult agency, hire. I also decide who I want to fire if I don’t like the way they relate to me. The people who I decide should become my friends do so because I have friendship to offer them in return. This would be impossible without facilitated communication. We are truly friends and although they are actually staff members they spend a lot of time with me when they are not being paid.. We go dancing at clubs, visit museums, do outdoor things, and really enjoy going to Vegas. We are upscale young adults who enjoy spending time together. I know that if I were still living at home I would not be nearly as independent as I am with my peers. My parents are very nice but they are too old to do the things we do as friends. Having friends is the best part of my life. I really can’t express to you how wonderful it is to have real friends who respect me in spite of my autism. I know they would be kind to me if I couldn’t communicate, but they certainly wouldn’t be friends. We discuss all sorts of things and excel at gossip.
Although they get excellent awesome really good salaries, and are exceptional people, I know that they would not remain my friends if I still exhibited the horrendous behavior I did when I was a child. Because of Facilitated Communication I was able to participate in my own behavior plans when I was in high school. I also wrote my own social stories to address specific situations. Although I still am quite able to throw a terrible fit, they are very few and far between. I can communicate with my staff when something is bothering me and we can avoid a tantrum. Very simply, without FC I would be an object of pity rather than a friend. It is essential that a non-verbal person be able to express what is causing a behavior. Sometimes it is neurological and there is no reason. In that case I just ask them to keep me safe until it passes. Other times there is something that triggers the behavior and we can discuss what we can do to prevent a tantrum. The ability to tell when you are sick is extremely important. The awful behavior I sometimes had was a reaction to ear infections. I still get them but can tell staff I have to go to the doctor.
. If FC is so beneficial why aren’t more school districts and adult programs embracing it? I would like to pose some possible reasons. First of all, we look retarded, especially when we move around. Some of us, with motor planning problems have pervasive movement problems. Our bodies just won’t do what we want them to do. We look retarded when we can’t respond to commands. Secondly, by admitting FC works, most professionals alive today would have to admit they were very wrong about 75% to 80% of us having mental retardation. Thirdly, if school districts and adult agencies admitted FC works, they would be ethically obligated to completely change their programs. I also believe that many professionals feel threatened that people who look and act like us could be smarter than they are.
I have touched on the technique of FC a little and would like to go into it with more detail. I think most nonverbal people with autism can learn FC with a patient and well trained facilitator. The people we see at our monthly workshops, where I teach, are progressing much faster than I did because we are better facilitators now. The goal of FC is for the person to type without physical support. It took me five years of gradually fading support to become independent. Now some people who have minimal motor planning problems can become independent in a few months when making choices on a dry erase board, and totally independent soon after.
When a person begins FC training she sometimes has a working brain and just needs a way to express herself. This type of person learns FC quickly. If the person is like I was and absolutely awash in autism, it takes a bit longer. We start with support at the wrist if the person can isolate a finger. We immediately move support up the arm so the person doesn’t become dependent on a lot of support. The facilitator never guides the user, but rather pulls the arm back to a neutral position above the target whether it is a keyboard or pictures. The facilitator might also intermittently take a hand away so the person feels he is able to do it with minimal support. The facilitator starts with simple yes and no questions, then moves to predicable answers, then answers with a few choices, and finally open ended answers. The goal is not only to be able to type without support, but to think and generate original thoughts. Copying words maybe a good exercise for the facilitator to teach a person how to use a keyboard, but it is not really communication. Typing echolalia is actually harmful because it interferes with a person’s ability to have original thoughts. Even when a person can do this independently it should be discouraged. Also when a person speaks echolalia and types it, he should be told not to speak because it is preventing him from developing sophisticated thoughts. When he stops talking you will see the content of his typing change. This is very difficult for the FC user because he is used to using the automatic part of his brain and you are asking him to turn that off and use the thinking part of his brain.
To become a good facilitator you must read about it, attend workshops, and have a mentor to be sure you are doing it right. If you live in an area where there are no good trainers you might want to use video tapes and have a trainer critique your work. You must be careful you are not influencing the person typing. I recommend looking at the Facilitated Communication Institute’s web site at Syracuse University http://soeweb.syr.edu/thefci. You can download the Facilitated Communication Training Standards and also purchase books and video tapes on FC. The standard training book for the method is Facilitated Communication Training by Rosemary Crossley.
The scientific proof of facilitated communication being valid already exists. I recommend that you read the August, 1996 study by Cardinal, Hanson and Wakeham in Mental Retardation, 34(4),231-242, in which 75% of the forty three subjects in the study validated their ability to pass a message to a naive facilitator using FC. In this study only answers that were spelled perfectly were counted as correct. I have attached a list of the studies where FC users have validated their typing. There are also studies that show FC doesn’t work. If you are interested in finding out why some studies have shown it doesn’t work and others have shown it does, I recommend a book by Doug Biklen and Don Cardinal called Contested Words Contested Science – Unraveling the Facilitated Communiciation Controversy. After examining all of the studies in print at the time, both positive and negative, Biklen and Cardinal found fourteen elements that had to be present in sufficient amounts for the FC user to pass a test successfully:
1. Extensive experience with facilitation by both the facilitator and the user
2. Practice using multiple trials
3. Facilitated communication user consults on test and format
4. Familiar facilitators
5. Monitoring for FC user’s style
6. No-risk or low-risk testing
7. Building confidence
8. Naturally controlled conditions
9. Ongoing feedback on performance
10. Minimization of word retrieval tasks
11. Information by multiple modalities
12. Age appropriate content
13. Personally relevant content
14. Extensive time to respond to questions
I believe the most important element is number 2 – practice using multiple trials. In the Cardinal study all students failed the tests the first day. If that had been the end of the study, it would have been one more study proving FC doesn’t work; however, because the study was conducted with multiple trials over six weeks, students became comfortable with the protocol and were able to answer the questions. Because we saw what happened with this study, we used that information when I was preparing for the SAT. I spent the whole summer doing practice tests so when I took the real SAT I only had to think about the answers, not taking the test.
The most troubling aspect of FC for some school districts and adult agencies is the fear of abuse allegations made by FC users. I understand this; however, what most people don’t know is that only one study has been done looking at abuse allegations using FC and that study concluded that such allegations should be taken seriously because so many had corroborating evidence. The entire study can be found in Botash A., Babuts, D.,Mitchell,N., O’Hara,M, Manuel, J., Lynch, L. (1994). Evaluations of children who have disclosed sexual abuse via facilitated communication. Archives of Pediatric Medicine, 148, 1282-1287.
This being
said I must also warn you that all allegations of abuse or actually any
allegation only should be taken seriously if there is reason to believe an
incident has taken place. Not only is
it possible for a facilitator to influence a person either physically or by
asking leading questions, but it is quite possible that the FC user is lying or
has confused a created scenario with reality.
I have done both of these things – the first when I was testing the
people around me, and the second when I honestly did confuse scenarios in my
imagination and reality. This being
said, I am still adamant about a person having the right to communicate in
spite of the dangers involved in FC.
The wonderful life I lead now which I thoroughly enjoy would not be
possible without facilitated communication.
The changes in my behavior, the changes in my relationships with family
and friends, and the growth and maturity I have gained have been worth a bit of
caution. The ability to communicate
definitely is a civil right and you should be obligated to assure that right is
extended to your children and students.
I will now answer any questions you have for me.