This is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.
F is for Facilitated Communication
I’m cheating a little bit today. I want to talk about more than just traditional Facilitated Communication, but I wanted to reserve C (communication) for Color and A (alternate communication) for Acceptance. Plus, I have seen facilitated communication getting a really bad rap in a lot of places so I especially wanted to put it front and center for an opportunity to focus on why facilitated communication is important and necessary and why people should stop giving it, and the people who use it and similar methods of supported typing, such a hard time.
Facilitated communication is often condemned as a fraud, with detractors claiming that the facilitator is using Autistic people (and other people with movement disorders) as a puppet. For example, in 1994 the American Psychological Association (APA) released a resolution denying the efficacy of facilitated communication. Yet methods of supported typing are still very popular. Why? Because there are many people out there with movement and focus difficulties who are actually communicating their own words and thoughts but need assistance and accommodation to do so. Critics claim that people using facilitated communication could not communicate so well because they could not have taught themselves to read and write, but I taught myself to read, beginning at age 2, so it is easy for me to believe that others are self-taught as well. I am intelligent, but I am not a different species — I am a human being and the things I have done are accessible to other human beings as well.
Are some cases of facilitated communication or supported typing “puppet shows”? I think it’s unlikely, but I haven’t seen every single case so I just can’t say it never happens. I have watched a lot of facilitated communication and I am friends with people who communicate through facilitated communication or related methods and I am not one bit skeptical. I know I am talking to my friends, not to the people who help them with body pressure, helping them to stay upright and mobile, or helping them to stay focused on the task they want to accomplish.
Before I go any further, I want you to watch some videos of different sorts of supported typing for yourself.
This is Tim Chan from Australia, facilitated by his mother, Sarah. He began with wrist support (a method demonstrated about halfway through the video clip) and, over time, has progressed to only needing a supportive hand on his shoulder. The goal of many people who use supported typing is to eventually transition to being able to type without a facilitator at all. Today, Tim Chan types independently, without physical support.
Notice that part of the support Tim is getting is the help in staying on task. That can be very important for Autistic people and does not at all indicate that the facilitator is controlling him. He clearly wants to communicate — even when he goes to roll on the floor, he gets up again right away when another question is asked. I really understand his distractability because I am the same way. I have more focus which allows me to do things like safely drive a car, but my support needs are low enough and my motor skills are high enough that the knowledge of the seriousness and danger of what I am doing are enough to keep me focused when driving or using a sharp knife or any other similar activity. I know one person who began communicating using an accommodated form of typing who may be able to drive a car when she gets old enough because she can do trapeze work now — work which requires a lot of focus and coordination.
When I am writing, or cooking, or drawing, or eating, I frequently get distracted and wander off. It is hard to stay on task. Obviously, I do stay enough on task to complete essays and art and to keep myself fed well enough to function (most of the time.) I need less support in my everyday life than many other Autistics. Tim needs that support to help him stay focused and not walk off in the middle of a sentence. It is clear to me that Tim appreciates the support in focusing because I do not see signs that he is becoming agitated or being forced to do something against his will.
Next is the trailer from the excellent film Wretches and Jabberers. In this clip you can see Larry and Tracey typing with support, and speaking — mainly by typing what they want to say and then reading their own words.
I would like everyone to see this film! It is so clear that the Autistic people in the movie who type to communicate are the ones who are making the words, not the facilitators who support them. Supported typing is not some kind of P. T. Barnum circus trick and it is disrespectful and dehumanizing to say that Autistics who need a lot of life support could not have thoughts to communicate or suggest that those thoughts can only be believed if someone who needs a great deal of support in other aspects of their life does not need support around communication issues.
Facilitated Communication, which began as an assistive method of communication for people with cerebral palsy, was first developed in Australia in the 1970s by Rosemary Crossley. Building on that foundation, Soma Mukhopadhyay developed the Rapid Prompting Method (RPM) in the 1990s, first to help her son, Tito (who now types independently), and later to help many other Autistic people to communicate. This is a video explaining RPM and showing the use of a letter board for typing.
And here are my friends, Emma and Ariane. First Ariane reads something Emma has written, and then we get to watch Emma’s process of communication, using Soma’s RPM method. (Emma can now type and write independently.)
So, now that you’ve seen what these sorts of assisted typing look like, I hope you are not so skeptical about their legitimacy. Why do other people have a problem with assisted communication?
One reason is probably because they have seen something more overbearing. I have heard of facilitated communication that is literally hand-over-hand like some of the life skills training, such as brushing one’s teeth. I think if I had ever seen that method used for communication I would be skeptical, too.
Some people are skeptical because they find it too difficult to presume competence when someone’s body moves in ways they do not value. They can accept Stephen Hawking’s intelligence because he was not always so physically incapacitated but they struggle to accept the intelligence and competence of someone whose body was always moving in scattered and unusual ways.
In an interview, my friend Amy Sequenzia explains why she needs the support to type. “Typing, for me, is not a simple thing. I need to focus and try to make my body and my brain work together. Sometimes I can’t do that. Sometimes I need a lot of physical support, sometimes I need very little. I can type a few words independently, although this does not happen very often, yet. I always need emotional support and encouragement.” (If you’d like to read more of Amy’s thoughts and experiences, here is another interview with her.)
Some people don’t see why a person would need support. As Kim Wombles wrote in her review of Wretches and Jabberers, “Can someone explain why a man who has the fine motor skills to paint needs someone holding onto him to type?” She was speaking of the artist Larry Bissonette, who does now type independently. It seems obvious to me that making coffee, painting, and communicating through typing are three different skills and being competent or even highly skilled in one does not necessarily mean a person is going to be equally skilled in all three tasks. Obviously, Larry needed the support and encouragement of supported typing to help him as he developed greater communication skills.
I can draw, but my handwriting is nearly completely illegible. I am able to produce very readable handwriting if I “draw” it, but that takes so much longer than most people allot for handwriting that I am unable to succeed on hand-written exams and I had to switch to a different major from mathematics because I could not finish math exams in time — I would know the answers to all the problems, but would have to write my work very slowly to avoid copying errors and, as a result, when time was called I had only worked through half the problems.
The same argument about support could be made for me. I can make coffee and I can draw — why do I require support and accommodations when it comes to handwriting? The simple answer: because I have a handwriting disability; dysgraphia. My difficulties with fine motor control do show up in my drawings, but because I am able to take as long as I need to complete a drawing (I take lots of breaks because holding a pen is very painful for me) and because people seem to see a “primitive art” charm in my wobbly lines, the dysgraphia is not as impairing when I am drawing a giraffe as it is when I am required to write a grocery list, a letter, or an exam.
I like to give people some sort of litmus test for considering controversial things in the world of autism and here is my suggestion about supported typing, RPM, and facilitated communication: when you look at people who type independently now, did their “voice” change significantly from how they wrote when someone was holding their arm or shoulder? If your child is learning to communicate in a supported manner, do they seem happier and calmer? Does it look like they are getting more of their needs met? The most important gauge of truth when it comes to communication is “where the rubber meets the road.” Is the supported typing or other controversial communication method making the person’s life better? If the answer appears to be yes, stick with it and see where it goes. Ignore the naysayers and focus on what is helping you, your children, your family.
There is plenty of evidence to use to gauge whether real communication is occurring. In the case of those folks who now write and type independently, it is clear that they have been the ones communicating all along. In the case of other folks who still need support, I feel it is best to presume that real communication is occurring there as well. Too many times, someone has been written off as “not being in there” only to later prove that they were, indeed, “in there” and were not so happy about being written off like that. The least harmful assumption is always that someone really is “in there” and that communication that seems to be coming from them is really their communication.
But even before someone develops independent typing (if ever. It is not a tragedy if they require support in communication for the rest of their life) there are strong indicators that real communication is taking place. Watch for those signs and, in the meantime, trust that you really are connecting with the person you seem to be connecting with. I am convinced that supported typing is valid. You may not yet be convinced as well, but if you love someone Autistic who is learning to communicate with support and assistance, you owe it to your loved one to trust their communication and to listen in love.