Reflections on the Rapid Prompting Method (RPM)

Background

A former coworker of mine has a nonverbal autistic daughter. She explained to me that although her child’s teachers currently assume she has below-normal intelligence, she believes her child may have normal intelligence, but is unable to communicate her thoughts to others because of sensory-processing and motor-control problems. As she explained it, RPM is a relatively new experimental therapy that takes this belief in autistic people’s normal intelligence as its premise. The therapy helps children learn to communicate by using a stylus to poke letters on a board in response to questions, at first with the therapist’s assistance, and then, after the child’s motor skills strengthen as a result of this practice, on the child’s own initiative. Once this stylus technique is mastered, the child may progress to communication by keyboard. 

As I understand it, the therapy is helping some kids, but many parents (including my friend) wind up being discouraged because insurance won’t pay for experimental things, because they are afraid of getting their hopes up and being disappointed, or because the teachers and experts they already know are skeptical or disapproving of it. My friend started the new therapy and saw promising results with her daughter, which she shared with me and which I thought were so incredible and moving I cried. Then my friend stopped doing it, because her husband is the chairman of the board of her child’s school. The school’s official position on any therapy is that people should not do it unless and until it is thoroughly proven.  So they told him if he kept doing this with his child (they are in a small town and couldn’t hide the fact, as they were hiring people to do it from a small pool of qualified people) they would kick him off the board, which meant a lot to him and his wife (my former co-worker). So they gave in and stopped doing it. When I heard this I was horrified, because I believe this child is now being deprived of something that could help her. But who am I to say?  I do not know very much about autism.

However, I couldn’t get the story out of my mind. I kept thinking about what might be going on from my friend’s daughter’s perspective, and I developed a theory about what it might be. I don’t know if it’s true: it’s just a theory, based on nothing but my own thinking. But I thought: sometimes in medicine, developing a theory more fully can help spur new research, even if that theory turns out to be wrong. This is because it gives you a broader set of hypotheses you can design experiments to test.  When you have a very vague theory (e.g., “this treatment could help improve autism”), all you can test is “Does it work?” If the answer is “Sometimes,” people think that’s an unproven theory, and that’s the end of it. But if your theory is, “This treatment can help nonverbal autistic people communicate by overcoming three specific hurdles they face when trying to communicate,” you have a lot more to work with. When it doesn’t work, you can say, “Maybe it didn’t work in this case because to succeed, it needs to do all three things, and in this particular instance at least one of those three things didn’t occur. Let’s look at that again.”

After all that I thought, there could be some use in sharing my ideas with someone who actually knows more than I about autism, so I can find out if people have already thought of all of this, and researchers are already on it. If they are, these ideas may not be new to them; but my way of articulating them still might be useful, to help convince people like my friend and her husband and his board of directors to give this theory a chance. And if researchers aren’t exploring these ideas yet, maybe there is some way the science might benefit by them doing so.

So here goes. Paragraphs are numbered to keep track of the main steps in the argument.

1. All of us, autistic and not, can think clearly if all we need to do is think. All of us also have trouble thinking when we are also processing physical sensations and the inevitable emotional response that physical sensations evoke. For example, even a Nobel Prize winning physicist might have trouble reciting his times-tables correctly if he was standing in the middle of traffic on a four-lane highway with cars whizzing past him, especially if hailstones were also falling on his head at the same time, and he also really needed to pee and was hungry. Maybe that’s how some autistic people feel in a classroom with other kids. So the first difference between autistic people and others, maybe, is not in the capacity for clear thinking, but in the bandwidth available for sensory stimuli.  Another way of saying this is that everyone has the same neurological bandwidth, but some autistic people have to use up more of it to process a given quantity of sensory information, so if they’re over-stimulated, they have less of it available for thinking.
2. All of us, autistic and not, are capable of understanding multiple meanings a word can have. The difference between autistic and non-autistic people in this regard, however, is that non-autistic people forget the multiplicity of meaning in cases when it seems irrelevant to the practical purpose at hand, while autistic people always remember the multiplicity of possible meanings, even when they know from experience which meaning is probably meant by a speaker in a particular context. I remember the example a different friend of mine once gave of saying to his autistic son, “The ball went through the baseball player’s legs.” The boy was surprised, because he thought his father meant that the ball literally penetrated the flesh of the player’s shin and came out the other side. My theory is that when a child like this boy learns (from his dad’s laughter, and his explanation of it) that “going through his legs” in this sentence was a metaphorical expression, what he records in his brain is something like the following. 

“The word ‘through’ has two meanings.  It can mean ‘penetrating a solid object and coming out the other side,’ and it can also mean ‘moving through space between two solid objects.’  If the word ‘through’ is used in the context of catching a baseball, the latter meaning is probably intended.” 

This kind of granularity seems unnecessary for understanding, if you look at it from the point of view of non-autistic people. However, breaking things down like this can actually lead to greater clarity and understanding, which is why there are so many highly accomplished intellectuals on the autism spectrum.  

If this is right, a second difference between autistic and non-autistic people is that autistic people have a greater awareness, at all times, of the variety of things a word (or facial expression, or image) could mean.

3. All of us have a hard time communicating when the mechanics of transmitting a message are faulty.The difference between nonverbal autistic people and other people is that the mechanics that can be faulty, for them, are inside their own bodies, while the rest of us only have to worry about external problems. In other words, even the clearest sentence in the world would start to look murky if you wrote it in crayon on a napkin, and then made a photocopy to send to somebody. 

Here is a scenario I imagine could occur, illustrating the three points above.  In all cases below the hypothetical nonverbal autistic child’s thoughts are illustrated in bold type.

1. The child, when in a peaceful, non-stimulating environment, thinks about tossing a baseball and with that image in mind, says to himself:  “I want to play ball with my Dad.”  (Identical to a thought a non-autistic kid could have.)
2. Then, because he remembers at all times that “play” can mean either “play with” or “pretend to be” (as in “I want to play a sheep in the Nativity play”), he goes on to think, with an accompanying image: “It would also be fun if Dad and dressed up in costume as balls and played together.  That would be a blast!  Dad could be a soccer ball, and I could be a baseball, and we could run across the yard and bash into each other. Fun. Actually, both of those activities would be fun.  I just love spending time with Dad. I will be happy when he gets home.”  (Joyous thought that a non-autistic person could also have if he were creative and very attentive to language.)
3. When Dad comes home, there is a lot of noise or stress (dogs barking, etc.) and the child is overwhelmed and can hardly think. When Dad greets the child, or perhaps even asks what he would like to do together, the child tries to recollect the thoughts he had above in bold. But since he’s dealing with some much sensory processing, he has very little bandwith left for recollection (which is basically like trying to read something you’ve written in a diary). So what he is able to recollect is just a smattering of fragments of his thought, and possibly not in the right order.  So he recalls something like, “Dad ball yard smash fun!”  
4. Finally, the child tries to say this thought but has motor problems controlling the speech organs. So if he’s lucky, it comes out as something garbled that the parent interprets, with effort, as “Dad ball!”   
5. The father understands that the kid wants to play ball with him.  But it’s hard for the kid to play ball, because his motor neurons don’t work, so the dad figures they can’t. Also, the dad thinks the kid is expressing a toddler-level sentiment about ball-playing, despite the fact that the kid is 9 and what he actually had in his head was funny and creative and age-appropriate.
6. If the family understands what is going on, they can do therapy to communicate better. But to be successful they will have to a) figure out what the kid’s sensory triggers are, so they can create a peaceful environment for thought and communication, whatever that means for that particular kid; and b) figure out what the motor-related hurdles are for that kid and how to overcome them without triggering any sensory problems that wreck the good work they’ve done in a). 

For example, maybe the kid needs to use a stylus, so they get him one and they think they’ve handled the motor issues. But the stylus is a garish color or the texture of it creeps the kid out, so he can’t think straight when he’s using it. Or maybe, most of the time it seems fine, but it’s made of a reflective material and when the light hits the stylus from the window at a certain angle it shines in his eyes and he hates it.  This only happens late in the afternoon, when the lesson is almost over, so the teacher thinks it means he’s tired, and the lessons should be shorter, but that isn’t it at all. He loves being able to communicate and could go on much longer if only it wasn’t for that light in his eyes. So when the teacher stops, he throws a tantrum because she doesn’t understand, and he doesn’t want her to go, and the parents don’t get it and think the treatment isn’t working.

 I have sought for years to share these thoughts in a form that might be helpful to researchers or families.

~ Kimberly Gladman ~