“Set work” is the term for the structured typing practice sessions that helps both the typist and the person who is supporting the typist. There are stages of set work that direct the non-speaking person to complete various tasks ranging from identifying pictures using type-written words to making open conversation by typing full sentences. Michael and I have mastered most of the stages of set work together.
It seems to help Michael when I start our sessions with a “fill-in-the-blank.” I write the statement. Michael “copy-types” it and then completes it with his answers.
The topics I want to talk about today are _________ and __________.
Michael completed the statement with: afraid and shave.
S: What are you afraid of?
M: I want to say that I am afraid of Tony shaving me.
S: Who do you want to help you shave?
S: Ok. I will help you shave tonight. Is that okay?
Kayla Takeuchi (Kayla’s Voice: empowering people with autism at www.newgroundpublishing.com) has been typing talk since she was 16. She is on her way to graduating from high school and plans to attend college. She persevered even though some people didn’t believe she had the skill to type her own words. These people, even professionals such as Speech Therapists suspected her facilitators were moving her wrist for her. Today, after years of practice, Kayla can type independently. She occasionally gets stuck and needs the light touch from her facilitator. Once assumed to be “mentally retarded” by school officials and incapable of learning, she has shown us that for her, instead of leaving her completely cognitively impaired, autism has affected her ability to coordinate her body.
Not too surprisingly for most of us, Kayla discovered that she became better at typing the more often she typed. What is perhaps more surprising is that she became better at activities that require the use of her hands. She enjoys hobbies now, and jewelry making is one of her favorites. She’s able to thread various sized beads, even the smallest ones. She says that typing helps her to feel more organized – clearly on many levels. It has afforded her a greater life.
I shouldn’t have been surprised when Michael began shaving himself more efficiently. His typing seems to be allowing him to use his hands in ways he hadn’t before. For example, he can now cut his hot dog into small pieces. Many of us wouldn’t see this as a great accomplishment, but it is for someone whose mom has had to cut his hot dogs his whole life and who wants to be more independent.
I could never completely understand why Michael would allow some people to shave him and not others. As with most of Michael’s “challenging behaviors” people tend to see Michael’s outbursts as him being oppositional, or at least trying to get out of something he just didn’t feel like doing. When he would punch a hole in a wall or when he slaps a table or wall to create a loud bash, it’s not a stretch to hear yourself thinking: “he is being noncompliant” or more to the point: “he’s being a brat.” That is, until you remember that all of us use the way we behave as a way to communicate.
When Michael typed that he was afraid of having Tony shave him, I realized the number of times many people in his life – including me - misunderstood Michael. What if every time Michael acted out, we first thought, “I wonder what he needs” rather than jump to conclusion that he was being cruel just for the fun of it. Before he could type his issue with shaving, he acted out his feeling by doing all he could to resist being shaved. Once he could tell me that he was afraid, I not only could address his fear, but I could acknowledge it.
So when I went into the bathroom and started shaving him, I wondered what he might be afraid of, and it came to me. If we use light pressure with the electric rotary shaver, Michael’s longer whiskers get caught in the blade. I know the feeling, and I don’t like it either… but I still need to shave. I “problem solved” with him. I showed him how to wet his face to soften the whiskers, and I showed him how to push the shaver closer to his face on his own. When someone else is shaving you and they’re being tentative, there’s more chance that the rotary will catch whiskers especially under the chin and jaw line.
One week later, I watched Michael shave. He is no longer afraid to push the rotary firmly against his face. More than that, because he is less fearful of the blade catching his whiskers, he will shave areas of his face where he wouldn’t before – as long as he given support. He has trouble looking in the mirror and shaving under his jaw because he gets disoriented. Much like supporting him to type, if you touch the area on his face with your index finger, he can “feel” where to take the shaver. Though he needs support from another person, he can handle the actual task of shaving on his own. Not surprisingly, Michael doesn’t resist shaving any more.
Michael represents one of many people with autism that I’ve met who use typing to talk. The more I speak to them, the more I realize how we perpetuate misunderstanding of nonverbal individuals by assuming that they are more “autistic” than human.