One of the main questions I had when I began considering facilitated communication for my daughter was whether it was applicable. After all she has some language, she has no problem pointing and is even able to type with her two index fingers. If given sentences to copy she can type them pretty quickly on her own without anyone physically touching her. So why would we even consider supporting her? Wouldn’t that be a step backward? These were my thoughts as I began investigating FC. *Please remember as you read this, I claim no expertise in facilitation, I am very much a beginner and am learning and questioning as I go.
Let me tackle these questions as best I can ~ Why did we consider supporting her typing when she already can type independently and has some language?
Em’s language is unreliable to us. I do not mean this as criticism, but as fact. We (and I am not only including my husband, but all non Autistics who come into contact with her) cannot know that if asked something her verbal answer is what she actually means. She relies a great deal on scripts and we do our best to interpret them, while knowing that we may be entirely wrong in our interpretation. Obviously if Em yells “No!” and then bites herself, we aren’t completely clueless. We understand that she means to say no and is unhappy with whatever it is that she is protesting. But the less obvious communications are not so clear. We do our best, but our best often falls short. I am not one who believes my neurology is superior to my daughter’s. I believe my neurology is greatly enhanced by the hundreds of accommodations I get in life and because our society is set up to help those like me operate in this world with fewer limitations than are available to my daughter. But that is probably a topic better served in a separate post.
When I went to the Autcom Conference this last fall, it was the first time I had witnessed so many of all ages communicating with a facilitator. It was a mind blowing experience. Seriously I felt as though I was on a mind altering drug for two days. Seeing so many communicate in this way was a transformative experience. It opened my eyes to what was possible. It was impossible for me to witness children, young adults, people my age with everything from severe physical challenges to few physical issues, all communicating their thoughts by typing and not ask, could this help my daughter. Some had some language, many had none, others read what they wrote, and still others did not. Some required help isolating their index finger, some had support at the wrist, many had support at their elbow, others were supported with a light touch on their shoulder and still others required no physical support at all. As I watched all these people, as I listened to their words, I kept thinking about my daughter.
Despite my daughter’s language she was not communicating at the level I was witnessing. At a certain point I had to ask myself this question ~ If we gave her the right support, would she not be able to communicate at a more complex level than she currently is? And the answer to that question was, yes. Yes because from a very young age she has demonstrated a level of thinking that is far beyond what she has ever been able to verbalize. I’m going to quickly backtrack to say, our goal for our daughter was always that she be able to express her thoughts verbally. Our thinking was, if we could just get her to speak everything else would fall into place. But I am beginning to realize this goal was limiting her and us in how we helped her. I now feel strongly and believe that speech is not the end goal, though communication is. Giving her the tools to communicate effectively in whatever form that may take has become our new goal. If that enhances her ability to speak, wonderful, it will be one more thing she can use to navigate life.
FC is all about resistance. This idea of resistance was the single biggest misconception I held about FC. I couldn’t understand why I would offer resistance when what I wanted was for her to type her thoughts. It seemed counterintuitive. But just as my daughter prefers verbal scripts, she also tries to type those same verbal scripts if given the opportunity. Resistance provides her with several things, it does not allow her to impulsively type just any key, it doesn’t allow her to type out favorite default scripts and it gives her time to think and then type the thought that is in her head. When done well she is able to communicate complex and sophisticated thoughts. I am not suggesting that she is suddenly writing sonnets or quoting Shakespeare, but she is capable of typing extremely self-reflective and introspective ideas which go way beyond anything she has ever been able to verbalize. When she is “in the zone” and by that I mean has a facilitator who knows what they’re doing and is giving her the proper amount of resistance her entire demeanor changes. She becomes intensely focused and there is a kind of calm that overtakes her. It is as though she is tuning everything else out. It is just her, the screen and the words she is typing.
I hope I’ve done her experience of this process justice, but until she decides to describe it herself, my interpretations will have to do.
*Judy Endow made a very insightful comment below and so I am amending the above sentence as it is an assumption that I cannot know to be true. That sentence should be:
I hope I’ve done her experience of this process justice, but until we are better able to facilitate our daughter so that she can describe the process in her own words, my interpretations will have to do.
For those of you who rely on FC to communicate I’d love to hear if my description of what I’m witnessing resonates and is at all accurate or reflective of your experience when typing.
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I am wondering about your line at the end that says “until she decides.” I know for me that many things are not based on decisions the way NTs perceive decisions. In fact, I have wanted to communicate many words on various topics for varying lengths of time so, in essence, I have already decided to do so. In reality, my ability to actually carry through and do what I have decided to do, is often not there as I wish it to be. When I cannot physically act on/carry out my own decisions people think I don’t want to or have decided not to and they say things like, “when she decides to do it she will do it” and often ascribe intentionality to my non action. I think it important for NTs to understand that deciding on things and and actually doing them do not often work in synchrony for autistics the way they do for NTs. I am only telling you all of this Ariane because I often want others to know ever so much more than I am able to communicate. I have already decided this and even so it doesn’t work out fluidly from my decision to my actions. If I were to guess based on my own experience I would guess that Em has already decided. Many more words but they are only in moving color form just now – not moving over to words just yet. Wish you could see, hear and know the melodious moving colors that paint my thinking. <3
Judy, I really appreciate your comments and insights. What you write gives me a different perspective and makes me see that in that sentence I’ve made a false assumption or at least one that I cannot know is true. Thank you so much for sharing this. I rely on other’s experiences to help me not only help my daughter, but understand a neurology that is not my own. What you’ve written is such a perfect example of this. This is not something that would have ever occurred to me. That this is something you’ve experienced first hand is very, very helpful to me in thinking about my daughter and her process.
Perhaps a better way to have written that sentence would be – “…until we are better able to facilitate our daughter so that she can describe the process in her own words, my interpretations will have to do.”
I wish I could see and hear the moving colors that paint your thinking too! I will keep trying…
My experience is a little different because my physical and motor difficulties.
But the “zone” is very close to my experience. Once the rhythm is established, the words can flow from my head to my finger in a way that makes sense.
For me the resistance is about the pull back movement.
Thank you so much for this Amy. This was very helpful and encouraging to me.
Such a funny coincidence to read this post today after having that conversation with Emma before trapeze yesterday and after a follow-up convo I had with her about this very topic in a dream last night. She told me, “Joe, you’re smarter than this. You’re almost as smart as I am. Figure it out. Don’t get lured by the words of my song; they are my body’s deceptive lyrics. They’re a veil to the mind’s messages passed in the melody. Hear the melody and you’ll hear my heart.” This is as close to verbatim as I can remember. I was blown away. This whole week has blown me away. I am forever grateful to you for introducing me to FC and having me along for the ICI workshop. I am also forever grateful for Emma’s patience with me over the years. I promised her I’d get this right and I’ll do whatever it takes to keep my word!
Wow! Joe this is so so great! I love what you dreamt she said to you. It’s definitely been an intense week, with more to come! Thanks for being such an enthusiastic part of the team and sticking with all of us over the years. We all appreciate you more than you’ll ever know.
I am so glad you are documenting this! Thanks Ariane.
Thanks Christy and I trust that you will correct me if I give incorrect information about proper practices!
I remember many years ago a person I know went from speaking to choosing to use a communication device. At the time I was still very much in my I will eventually catch up and can somehow pass for normal phase of my life and I thought this was a huge step back for that person. In reality it made sense. He was a very skilled person with unreliable verbal communication. It was less confusing in his workplace if he used relaiable communication all the time and he was then thus seen as presumably more competent as a huge issue with non-fluent speech or speech that won’t come at all is that people make judgements about what that means about your intelligence. My own workplace I almost never have to speak. Apart from the occasional training sesson on Skype where I train someone or my boss on another team trains me I type 99.99 percent of everything as does everyone else in my kind of work so it’s “normal”.
I have my moments when I can’t speak. I carry a tablet just in case and go into some situations with things written out. It turns out for me most of the time being prepared for the eventuality in itself helps. In my life 98 percent of my communication is probably written despite speaking most of the time when I am with humans. It’s just easier to write. The stress of not being quite sure if words will come or not is a very real stress. There have been times I have not even been sure why they wouldn’t as I didn’t think things were bad enough for them to be gone or halting and people do treat you so differently if your words are too slow or not there at all that it’s really much more horrifying than it needs to be if people would just accept that communication and speech are not synonymous and that verbal only means the ability to speak and has no extra meaning about other competencies.
“…if people would just accept that communication and speech are not synonymous and that verbal only means the ability to speak and has no extra meaning about other competencies.” This. Exactly. It’s taken me awhile to understand this, but so glad we finally are!