I wrote the question, “What do you hate most about having autism?” and Michael copied the question by typing with his index finger. Continuing with his answer, he typed, “I hate that I cannot talk.”
Michael is 20 years old. Although he doesn’t speak, he has developed ways to communicate what he needs –things like DVD’s and episodes of “Thomas the Tank Engine” on YouTube . He also points to pictures of places he wants to go and foods he wants to eat. For Michael, this has been a very limited communication system; but he was sharp enough to come up with other ways to get his messages across. He would attack our home care staff assigned to him, and he chased after then repeatedly hit his mom if she couldn’t get the computer to restart – or if the electricity went off in a storm.
I learned that Michael could use his Alphasmart (a portable keyboard with a screen) to type out title of episodes listed on YouTube. He’d type the title without any help, and then he’d take the Alphasmart to his mom to show her which episode to download. If she couldn’t get the download to work, Michael went out of control. He punched holes in his bedroom walls, slapped the flat TV screen in the living room, and worse, threw his computer monitor across the floor. He went through a lot of computer monitors.
In June 2009, I learned something else about Michael’s typing abilities when I mentioned to his family that I was attending Syracuse University’s Facilitated Communication Summer Conference. When Michael was 8 years old, some of the teacher’s assistants in his classroom were giving Michael physical support to hold his arm up longer so he could type sentences.
The school questioned Michael’s ability to type so they hired a Speech Therapist from Rutgers University to assess Michael’s skill. That Speech Therapist concluded that the teacher’s assistants were moving Michael’s arm for him and typing their words, not Michael’s. The school stopped allowing the staff to support Michael while he typed. So for 11 years, Michael was left without his voice – a voice that likely could have been developed much further. No wonder Michael’s been so angry.
We don’t know what is in store for Michael, but now at 20 years old Michael is again an FC User. By giving him physical support while he types, he now expresses his thoughts, feelings, opinions, and desires. He is holding conversations with me, his mom, and his grandmother. Little by little he is showing us he has a lot to say and that he’s eager to practice his typing skills. He has an iPad now, and he relies on it to communicate. Recently he typed, “My computer is the best thing I have.” There are days he practically runs to it when I ask him, “Are you ready to type to talk?”