The Spectrum of Autism
The Spectrum of Autism
The story of Stas as told in a letter from Russia:
I, Susan, am going to explain some of autism in the voice of Stasopher Eesyvanovich. I am a 13 year-old who has autism or so they tell me: I have the most basic type of disorder. I have trouble all day every day understanding people and objects. I visualize all of my day as shapes and colors and sometimes size or weight or length. It is hard to look anywhere sometimes. I just can’t look so I wander in the colors and the shadows, with nothing to do then something appears and I move to it. What is it?
My body is always moving, leaping and swinging. I make copies of everything I see as if it was the first time I ever saw it. That is my way of understanding. I make different but new copies every time new. Now, it is always struggle and I can bite and pull hard when I lose what I was looking at!
How would you enjoy the process of inventing new a person or a place? (places have lots of parts to put together.) It is also very hard for me to have to make a copy of single object like a pencil or a book or a video game-everything I see. I have the same problem with what I touch and what I hear. I am always in the reinvention mode, adjusting the sound, adjusting the volume. Losing it, flailing around wildly, and then finding a way to control movements I do not even recognize as mine.
I need to be alone and you as parents need to repeatedly make sense of my experiences by drawing, copying, writing, tape-recording, video recording or speaking first about what I know (my talents and abilities) and also what I do not understand (the content of school work, other people’s feelings, rules and choices and boundaries and especially social manners. Ask me if I understand and practice play-acting what I do not know. Pretend I am in acting class. Use your imaginations and make up ways to grab my attention, increase my facial focus and always give me my own space to tune out.
Well, this is the way I understand people and places and objects, so what do my support staff do about it? First, teach me to hold two things at once one in each hand and wear clothes that are soft or hard or whatever I can tolerate.
Give me vests with weights or weights with gloves, or balls or rollers or blankets and hiding places to retreat to and to calm me down…... Find me a safe space near my family ….when I react to sensory types that bother me at the moment and the closer to my favorite person the better. I usually try to hide but I must be approached however you can.
Words, or touch or a sound or a sight or silence or some other stimulation may work or not. Leave me a tape recording of something I like to listen to and tell me how I am feeling. I do not understand how I feel, so tell me.
I do not take in the normal feelings you aliens feel so I need interpretation in a secure place. Make up a story or dance and sing or something, but respect me when I tell you I need help and then do it. I will try to help you back, later.
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