Susan's Blog

Wednesday, September 6, 2017

Thoughts on Facilitated Communication, “FC”

Ned came with us (Nat and me) to our second Facilitated Communication session today. Although I have some doubts about what it all means, if there is even 10% of Nat’s “real” thoughts in what he typed, then I can’t even… I can’t bear having waited this long to try it. All day my heart’s been hurting, but it is pain that is a complicated mixture of every color, every temperature.

You have to see it to believe it. And even then you might not. But I am not saying I don’t. I went in with an open but highly focused, discerning mindset. The way it’s done is that the individual types either free thoughts or from picture prompts or conversational questions. He types with his one finger, whichever hand is his most functional. The facilitator holds on under his wrist as support to keep his hand straight and strong and full of intent. As sessions and capability with typing progress, the facilitator uses less and less support, ending with perhaps a hand at the shoulder, or none at all. So there are fading-out goals. There is not much research but there is a study being conducted by Mass General Lurie Center at this time.
The fact that the facilitator pulls the individual’s hand away rather than guiding it, and the individual must move his pointer finger forward with strong intent — makes it easier to believe.  The pulling-away kind of “forces” intent in the individual, and also gives him time to be sure of the letter he is going for. It is a way of interrupting rote responses, impulsive typing. It’s all done on an iPad, there’s no prompting from the facilitator.  Just stuff like reading his typed sentence out loud and saying, “I’m not sure what that means, can you say more?” or “Oh, wow!” And so forth.
Some questions they asked were open-ended, some of the typing was with pictures as prompts. I’m guessing that facilitators structure sessions differently depending on your level of facility with typing and speaking — Nat is fairly good at typing with one finger, and he can speak, though not on a very sophisticated level, so they use open-ended questions and pictures for him to type from. 
Some of what he typed seemed like thoughts that might be “over his head.” But other times it seemed like it could be Nat’s unique syntax. The best part was when there was a pic of the golden gate bridge and he typed that it was going to Boston and 93. He is very very into route I 93.  The most emotional part for me was when he typed something about “dad in area first time,” and “possibilities to fail. dad” also “the brain in my head is just intelligent.” He did not type about his dad at all the first session. But he did type about me. Those words made me skeptical, however; they were something like “from birth until death Mom’s got your back.” 
But who knows what he has absorbed through years and years of listening and listening?
The point I conclude with is, that at very worst, FC is guiding him to create sentences by typing, which is not a bad thing. In other words, worst case scenario, FC is a start in modeling conversation and self-expression.  At very best, he is being given a new kind of support and touch that stimulates communication because it is via a new mode (not just oral questions and answers).
Nat’s (possible) success all makes sense to me in a way because he originally learned to read through spelling, through putting together letters that spelled words (the game “Spell-A-Puzzle”):
I watched him for the entire session, and I could see his pupils constantly on the keyboard, not wandering or spacing out. At one point the facilitator had me hold her hand which was holding his and I could feel his hand pulling us forward and her hand pulling us back. But sometimes it felt like she was pulling us forward — but that is also perhaps because he was pulling us both and it is hard to differentiate who is pulling whom.
Why am I/are we so skeptical? What’s the harm in believing? Is it the cost, the hassle in getting there?
The fear of getting our hopes up too much? That’s a big one. Remember Secretin?
But if this is something he wants/needs, I *have* to do it some more.
Christ, if this is real, then… mind blown, heart blown.
Afterwards, in the car ride back to his Day Program, we would make eye contact and there was an openness there. A vulnerability? If I were to really let my imagination run, I would say he was kind of saying “see?” to me. Lower case. Because even he had a hard time believing it.
And so:  we’re going back.

9 comments

Yes, Susan, I too feel the openness and vulnerability and the possibilities of imagination which are grounded deep in Nat’s reality like soil and plants.

And of course he was saying “See” or at least implying/inferring it.

Yes – it can be hard to believe!

This morning and afternoon I read a lot of Rapid Prompting Method accounts from the generation after Nat from James; Fox; Philip Reyes; Ryan and Jordyn.

And the fact that Nat did learn how to spell and read [like Alex from Twice Exceptional which I was just visiting him and his Dad and his Grandma – #livingandagingwell ].

Well I remember Secretin and the *hype* around it. Listening to a tale about bodybuilding right now and the supplements involved. It was also the year of Andrew Wakefield and Autistic Enterocolitis. Though I think AE came first and then Secretin at the big Autism Society of America conference.

Therapeutic Goods Administration in Australia let it fizz and put the kybosh on it eventually – about Christmas 1999.

Self-correcting / errorless puzzles! Implicit learning is so important – Michelle Dawson and Enhanced Perceptual Functioning.

I think you will learn a lot about how Nat perceives and conceives and conceptualises and how he processes his environment – internally and externally.

So Ned was new to the area and learning his path/craft?

And that was a great point about forcing intent.

“There is not much research but there is a study being conducted by Mass General Lurie Center at this time.”

I do know the Nancy Lurie Centre very well and MassGeneral in the past two years.

“I watched him for the entire session, and I could see his pupils constantly on the keyboard, not wandering or spacing out. At one point the facilitator had me hold her hand which was holding his and I could feel his hand pulling us forward and her hand pulling us back. But sometimes it felt like she was pulling us forward — but that is also perhaps because he was pulling us both and it is hard to differentiate who is pulling whom.”

Glad you saw that you were being pulled forward. Push-mi-pull-you?!

— added by Adelaide Dupont on Thursday, September 7, 2017 at 3:46 am

Hmmmm….not sure about this. Honestly the steps surrounding RPM are much more trustworthy and kids have had such success. I read all of Soma’s books and she really breaks it down and goes into much more detail than this. Rhema (of Rhema’s Hope blog–they live in MA.) has done so well that she left her center and is now in a typical school. I would trust RPM much more than this-it sounds too much like the old FC. Just my opinion.

— added by Annie on Thursday, September 7, 2017 at 12:32 pm

I’m not making any generalizations about FC, old or new. I’m going with what happened in our own session, and with the respect I have for the two professionals there, and the body language and attitude of my son. Nat’s 27, not a kid. I don’t understand how you can be sure or not sure about something that happened to him, someone you don’t even know. He’s a complex man, and I’m not looking for “left of center” or “typical school.” It’s a whole different thing when they’re adults. Nat is interested in typing, so we’re doing this. And to be honest, there wasn’t anyone doing RPM around here that was interested in taking on a 27 year old with complex autism. This is our own thing and I’m giving it a chance. That’s all.

— added by Susan Senator on Thursday, September 7, 2017 at 12:40 pm

Is the Lurie Center still accepting people in this study? I’m on their mailing list but didn’t see anything about this one or I would have jumped on it for my 16 yr old!

— added by Cathy Mealey on Thursday, September 7, 2017 at 6:14 pm

I thought they still were?

— added by Susan Senator on Thursday, September 7, 2017 at 6:15 pm

So interesting, I would go back too. Do they ask questions that only he would know the answer? Like, “what did you have for breakfast?”

— added by Susan on Sunday, September 10, 2017 at 7:39 am

Rarely… it is challenging sometimes to believe it, considering how different his other modes of communication are. Trying hard not to be skeptical or cynical about his abilities. It will take some more observation before I truly know what’s going on.

— added by Susan Senator on Sunday, September 10, 2017 at 9:52 am

Our 17-year-old daughter and 19-year-old son both nonverbal with autism started using facilitated communication last year and are now taking some regular high school classes with assistance from facilitators.

— added by Sharon smith on Wednesday, September 13, 2017 at 10:42 am

So exciting to hear that!!!!

— added by Susan Senator on Wednesday, September 13, 2017 at 10:49 am