I think most of us don’t like feeling “out of control”. In the big scheme of things we have so little control but we like to feel in the day-to-day that we have a lot of it, a whole lot! Well if you know anyone with autism you know that a major part of the struggle is that they can’t control anything. It is hard to imagine what it would be like to send a message to your body and it just doesn’t respond. To have a thought but your tongue, jaw, lips and breath won’t form the words you need. And to have so little emotional control. Apparently that is one of the most stressful parts of the brain injury that we call autism; emotions of all kinds can completely overwhelm the central nervous system. It is one reason why the kids shut down or look like they are shut down, because it is safer and easier to turn it all off rather than deal with a runaway central nervous system.
James’ speech pathologist did a lesson with him on Stephen Hawking. She has been giving him a lot to think about by introducing him to great men and women who have lived amazing lives despite their disabilities. She explained that ALS is a neurological disorder that results in loss of voluntary control of the muscles. She asked “Can you relate to this experience”? He said:
I AM NOT ABLE TO CONTROL MY BODY BUT I AM ABLE TO CONTROL MY BRAIN SO THOUGHTS END UP AS ACTIONS. FOR EXAMPLE, I FEEL FRUSTRATED AND TIRED AND THEN I MAKE A LOT OF NOISE AND PURPOSEFULLY ACT OUT AND SHOW THAT I AM MAD. I FEEL BAD SOMETIMES THAT I CAN NOT BEHAVE MORE APPROPRIATELY. I UNDERSTAND THAT THIS UPSETS MY PARENTS BUT IT IS THE ONLY WAY I KNOW HOW TO SHOW HOW I FEEL. I DO NOT LIKE NOT HAVING CONTROL OF MYSELF. I FEEL LIKE IT MAKES ME LOOK STUPID AND MAKES OTHERS THINK THAT I AM NOT SMART. IF THEY ONLY KNEW WHAT I WAS THINKING THEY WOULD BE SHOCKED. I AM ALWAYS THINKING ABOUT SOMETHING.