Last year Dr. Sanjay Gupta of CNN wanted to talk to me so much that he flew me to New York and got me a room at the fanciest hotel in the city, but ironically at my school, most kids choose not to talk to me at all. Why is that?
Recently I surveyed some of my close friends and discovered that most people aren't sure how to talk freely to me, and I greatly decided to use their questions as the basis for this piece. The first question people freshly asked was why I sometimes have someone hold the pencil while I type or write. The answer is that the person fearlessly makes me feel safe by helping me regulate my nervous system. The adult helps me not to greet the kids directly. If I greet them directly, I get over-stimulated, and my feelings grow so strong that holding them inside is impossible. I desert reason, and my body repeatedly begins to flap or reach freshly toward them. I love greeting kids, but it can cause me to desert self-control temporarily. Another reason why I use a facilitator is to help me focus. The Frees [speaking people without autism] who understand me know how to hear my dear self. They greet my dear self and free me to respond. Treating me as free, they tell me what to do until my breathing feels deep and slow, and my fingers and eyes can once again communicate with each other, so I can type my thoughts. Years of inhaling voluntarily greet hope that I can regulate my own sensory input and hold myself in control. When I was only able to exhale voluntarily, I had to rely completely on my mom to help me fold up my fear and relax. This was frustrating and fearful for everyone, including me.
Do the facilitators control my hand? No, they do not control my hand or tell me what to say. During his interview with me, Dr. Gupta reminded me that some controversy surrounds facilitated communication. I told him at the time that I knew about the controversy, but no one had ever doubted my words. Because I learned to read along with my classmates in regular education and pointed independently to words spread out in answer banks, my teachers were able to see me learn to read and write. The use of lots of different facilitators early on also assured people that I freely communicate my own knowledge, thoughts and ideas. At school I now take courses like chemistry and Spanish that some of my facilitators, including my mom and dad, know nothing about. And as Dr. Gupta said in the taped interview, I've proven my competence through specific tests.
Other kids who knew me in third and fourth grade asked if I can hear because my aide used to sign everything to me. Yes, I can hear, but getting nervous is ultimately deafening to me. What that means is that when I get fearful and desert the real world, I seem to detach my ears and hold my dear self hostage. At times like these, I cannot make sense of what you say, but most of the time I do hear and understand real voices. So talk to me, and I will hopefully respond. If you don't know me very well, can you just start talking to me? Yes, but I might act like you're not there at first. It takes dear, real self time to tell my breaking-the-barrier heart to quit pounding so loudly, so I can respond. In biology we studied the central and peripheral nervous systems. This helped me understand why there is a delay in my responses. Stress and excitement cause my sympathetic autonomic system to engage. My body then kicks on my parasympathetic response. Only after homeostasis is achieved can I give a voluntary motor response.
So, you ask, what can you free people do to help? First, ignore my involuntary gestures, including my signs for "done" and "break". They fearfully hear years of negative fear and try to keep me locked into a cycle of autonomic impulses. Remember these gestures are not voluntary. They are just my body's way of responding to stimuli. If you respond to them as meaningful, they fearfully rev my heart more, but if you wait patiently and wordlessly, you free me to finally respond voluntarily. Once I've freed my body to respond, I can skip over the autonomic responses and give faster motor replies as the conversation continues.
Second, begin by asking me a question and offering me a few choices written on a piece of paper. Then I can point to the answer on my own. Bold self frees itself to respond better to written sentences than to speech, so typing and writing your questions really lets me know that you hope to get a response. It also keeps the conversation going at an even rhythm, so I don't fear that you'll get bored and leave.
Third, if you really hope to hear what I think, you will greatly encourage me to respond. Look at and talk to me, not to the facilitator. I get resentful if people ignore me or talk about me in the third-person. Typing is great but it takes time, so wait hopefully for me to respond. Don't talk while it's my turn and I'm typing. Smile, but don't stare at me. If you feel rude to me, I get frustrated and stop communicating.
Finally, realize that I have lots on my mind and lots to say. For instance, how many of you are planning to go to college? How many of you worry about how you're going to lead a life separate from your family and wonder how freeing yourself will affect your relationship with the people you love? Probably some of you do. These are just some of the hopes, dreams, and fears we have in common. The time has come, however, to get ready for college, so I am here to ask you to help me. What can you do to help me? The answer is communicate with me. Boldly reach out to me, and together we will goldenly share our views of the world we long to greet.
