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January 16, 2012 / paperkids

Support for Facilitated Communication

My hand supports Emma's arm just below the elbow

In light of much skepticism surrounding FC (Facilitated Communication), I felt compelled to share another side to the story.  It’s a side that needs to be heard in the same way that we all need to be heard.  But for many, that voice may not be quite as loud because it’s not a voice, but a word typed out on a keyboard.  Even so, if we truly listen, these words can change the world.

I wake up this morning to an email from my awesome sis in-law, Dena.  It’s an article about a boy named Jacob, who uses facilitated communication just like Emma.  Another wonderful story of a person finding their voice despite being unable to speak with their mouth.  His story sounds so similar to Emma’s that I get giddy all over again.

For Jacob, facilitated communication means that someone needs to touch his elbows while he types on a computer or his iPad. “He says that if we don’t touch his elbow, he’s thinking about a Disney movie or people in his life,” Hanson said. “He has to turn off this other noise that’s going on in his head in order to type. Someone touching his elbow helps Jacob focus on what he wants to type.” ……….

The article closes with some wonderful words of inspiration from Jacob.

“For people with autism, every day is an unending struggle to remember that we are not so different after all. You can help by smiling at us, by welcoming our presence and encouraging our participation. In the end, it comes down to recognizing God’s image in every single human being.”

Jacob, now 19, doesn’t feel like he’s far from reaching his goal of complete independent typing.

Thank God, I thought.  These are the stories that kept me going before Emma began communicating through typing.  I soooo needed to read this.  This story put my heart at ease in light of the dark place it had been just the night before.  In researching for this post, I’d come across too many negative comments and attitudes towards FC.

For those of you who might not know, FC  is the method where a  facilitator will support a child’s hand or arm  while they type.  The goal is to fade back, working toward independence.  For kids and adults with autism, who are nonverbal and who may have a hard time with motor planning or feeling their body in space, this has been a useful method to open up the lines of communication.

I use FC with Emma technically, yet I didn’t really think about the methodology at the time we began.  I had been studying IPM (Informative pointing method) which incorporates supports initially and  we just sort of had our breakthrough, during typing practice.  And oh, what a life changer it was!!  I found out that my daughter’s favorite color was yellow. I discovered she has a deep belief in God that put my faith to shame.  I couldn’t stop asking her questions and I even started a blog to share all about this exciting journey into communication we were experiencing.  As far as FC, I have faded back quite a bit over the last year and I know in my heart that one day Emma will be typing without any supports from anyone.

I really believe that no two communication processes can be exactly the same and you can’t put a time frame on it.  It’s a journey for each individual.

A tragic story, a 0ne-sided story

I honestly did not realize that facilitated communication (FC) had such a bad rap.   Not until I watched 20/20’s recent segment on FC with the caption “Miracle or NIghtmare.  The segment which aired on January 6th on ABC 20/20 told a tragic story of a family in Michigan ripped apart through allegations that the father  had sexually abused his daughter who has autism and is nonverbal.  The daughter herself was reported to have typed out the allegations through FC with the support of a facilitator.    The case was dismissed in court, but not before implying that facilitated communication was a completely invalid method of communication.  It was implied that it is nothing more than a manipulation by the facilitator – a kind of subconscious ouija board effect – and that the girl was not in fact communicating at all.  This is not the first time that FC  has undergone serious skepticism.  It’s been stories like these, in part, that have given FC such a negative reputation.  Don’t get me wrong.  I feel so sorry that a family would have to go through any such trauma.   But why denounce the entire method and make it seem like an atrocity?  A speech pathologist and critic of the method was asked  in the 20/20 article as to why he never continued his research on FC…

“It’d be like suggesting that we continue to study cold fusion or bloodletting,” Shane said. “When it’s over, it’s over.”

Really??!!!!  Why such a one-sided story about FC?!

Where were the success stories proving FC to be a valid method of communication even leading to independent typing?   There is at least hundreds of people who effectively  communicate this way!  This article would have you believe there were none, but that simply is NOT true.

How many mothers out there or professionals will see shows like these and think “I thought so!!  I thought these kids weren’t really communicating.  I just knew it.  It’s all a fake.”   This just breaks my heart because what America didn’t see were all the cases of FC being a wonderful tool that helped a child be able to communicate when nothing else worked.  They didn’t see the cases of kids and adults who started with FC and went on the communicate independently.  Are you going to say that those cases are a fraud?  This is the real evidence that FC can and does work, and the truth isn’t always found in a tragic, one-sided news story.

I was not the only one who thought it bias.  The Institute of Communication and Inclusion in Syracuse noted it on their site as well.  Here’s the statement in its entirety  (that you should totally read).  I’ve listed only a couple of the great points made in argument against the segment’s one side report:

Perhaps most importantly, it failed to alert viewers to the fact that there is an extensive body of research literature in which the method has been validated, including research that involves video eye-tracking showing that the subjects gazed at letters sequentially before ever moving the hand to type them (Grayson, Emerson, Howard-Hones & O’Neil, 2011), linguistic analysis demonstrating that the individuals with disabilities employ significantly different patterns of word use than their facilitators and that they were different from each other even when sharing the same facilitator (Zanobini & Scopese, 2001; Tuzzi, 2009), evidence of speech before and during typing (Broderick & Kasa- Hendrickson, 2001; Kasa-Hendrickson & Broderick, 2009), and message passing, where individuals demonstrated authorship by conveying information that was masked from the facilitators (Cardinal, Hanson, & Wakeham, 1996; Sheehan & Matuozzi, 1996; and Weiss, Wagner & Bauman, 1996). In contrast to the message passing test shown on the ABC story, in each of the research studies noted here, individuals with disabilities demonstrated the message passing ability only after multiple practice sessions; it is possible that with familiarity with the process of this assessment, the individuals became desensitized to anxiety associated with being so assessed.

And it neglected to mention that the one scientific study that has been conducted on the facilitated communication and allegations of abuse found that the patterns of disclosure of abuse via facilitation follow precisely the pattern seen with children who speak, showing that in approximately 1/3 of the allegations there is corroborating evidence including physical evidence, in 1/3 of the allegations it is unclear whether there is sufficient evidence to proceed with legal action, and in 1/3 of the cases the allegation proves unfounded (see Botash, Babuts, Mitchell, O’Hara, Lynch, & Manuel, 1994).

As I viewed the segment on ABC, I kept waiting for some shred of objectivity in this story.  Even if they had stated that FC may not work for everyone or that it could be misused, that would have been better than denouncing any validity whatsoever and making it out to be some kind of misleading miracle therapy that simply doesn’t work at all and can even be harmful.  The saddest part for me might have been when her parents  conveyed how they had wanted to believe so desperately that their daughter was communicating, now feeling like it had all been a lie.  It seemed an especially tragic ending to this already tragic story.

I sat there horrified and when the show was over, I felt sick.  I am so thankful that I didn’t see this show when we had our breakthrough with Emma or even before.  I may have never tried it and may have never heard her voice at last.

Because Emma hears EVERYTHING in this house even when it seems she’s not listening, she is quite aware of this skepticism and I wish that she weren’t.  But I know that she is strong in who she is.

Emma via keyboard:  Trying to understand why people would judge something that is so true to the people who loudly use it.

The Real Deal

So here’s the real deal, people – If you don’t believe that FC can work in some cases, you are wrong.  Today, I’ll introduce you again to Sue Rubin.  I first saw her in Gerardine Wurzburg’s documentary Autism is a World.  What I had forgotten until I started researching for this post, was that Sue began with FC.  Her parents had heard the controversy over it and were reluctant.  But her teachers persuaded them to try it.  Her world opened up at last and within five years, she was typing independently, as is stated in her speech at the 2003 Autism Conference for The National Autism Society.  She went on to go to college and now gives speeches, that she types out, at conferences and is a huge advocate for autism and communication.  I know this has been a llonnnngggg post.  But please read what Sue Rubin has to say.  This information needs to be heard.  It could give a child, like Emma, a voice.

I will never stop supporting communication for those with autism.  I will never stop believing in what is possible!

Thank you so much, Sue!!   There is a clip below from Autism is a World.

Facilitated Communication – The Key to Success for a Non-verbal Person with Autism

Autism Society of America

2003 National Conference   July 16-20, 2003

            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.

… click here to read Sue’s entire speech.  It is a MUST read!

             

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8 Comments

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  1. MOTSL / Jan 16 2012 1:04 pm

    Sue Rubin’s speech is inspiring and her story compelling. Because I know Emma, I know what a miracle it has been to see her life, desires, and hope be openly shared with us through facilitated communication. It has opened up her world and anyone who knows Emma, knows that it’s the ‘real deal’.

  2. Katie / Jan 17 2012 7:06 pm

    You are such a gift, Sabra. This is so well thought out and researched. I know God gave you to Emma and Hayden because there’s no better angel to watch out for them and over them. Many other kids are going to benefit from this journey of yours. Keep up the good fight and keep the faith!

    • paperkids / Jan 21 2012 6:59 pm

      Thank you so much for that, Katie. Sometimes I need to hear it. Love you

  3. Mona / Jan 21 2012 3:42 pm

    Wow… I just love your blog …..it opens a world of understanding Autism…I was astounded by sue Rubins speech! How sad that people are talking against FC …Hopefully, people like Sue can show how real FC can be a tool to help others with Autisim live independent lives…and God Bless those facilitators that devote there time to support!

  4. paperkids / Jan 21 2012 7:03 pm

    Thanks so much Mona. I, too, am so moved by Sue Rubin’s speech. I really hope perceptions change to give so many more people out there with autism a voice.

  5. Joshua A. Hyfler (@JHyfler) / Dec 12 2012 4:22 pm

    Anecdotes are nice, but hard proof is better.

    • paperkids / Dec 12 2012 7:13 pm

      Joshua, Yes, many people feel the way you do. The processing for those with nonverbal autism is something that science cannot even begin to understand. If you read and research about others that are communicating independently you will have a better idea about all of it. But the proof is in those who went from supported to independent communication and there are many who have. YOu might want to do further research.

      • Joshua A. Hyfler (@JHyfler) / Jan 14 2013 5:47 am

        All I do all work week is help nonvocal children find their voice. I’m versed, but thanks for the recommendation!

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