October 2, 2008
Transcendence: Jacob Artson’s eloquence and spirit defy his severe autism diagnosis
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(Page 3 - Previous Page)Slipping Away
It's been a long road for Jacob to get where he is, and Jacob tells me about it as we sit down to talk in his living room.
"I was diagnosed at age 3, but I knew long before that that something was wrong with me, which was gradually depriving me of my ability to engage, and it terrified me because I had no idea what was happening," Jacob said. "I remember being able to play with my wonderful Shira for hours without getting totally overloaded with sensory stimuli, and also I was starting to talk. But I got stuck, and Shira took off."
As his finger glides over the keyboard -- he doesn't look at the letters as he types -- a slight smile sits on his fleshy face. His yellow-flecked hazel eyes seem to be focusing on something in the distance, as if he's engrossed in a movie.
"When I was first diagnosed, there was always a noise in my brain that sounded like static," Jacob said. "It was really annoying and made it very hard to focus."
A psychologist taught him how to focus on one thing at a time. "As difficult as it was for me to try to speak or keep engaged, I tried mightily because he believed in me."
As intelligent conversation comes out of Jacob's left hand, his right might be playing with his toes or tugging at his thick hair. He may suddenly start singing "Shabbat Shalom, Hey" or "It's a Small World," or screaming out phrases like "Jungle Book," or "I'm hungry, Abba."
Jacob is at the extreme end on the autism spectrum, an array of sensory input, motor and regulatory disabilities that manifests differently in each person affected. Autism Spectrum Disorder affects one in every 150 kids born in the U.S., according to a 2007 report. Before the numbers started going up in the 1990s, the rate was about one in 2,000 births.
"I think that being autistic means that it is hard for me to control my body and my emotions, because I have such strong feelings, and I can't shut it down," Jacob explained.
Overexcitement can trigger his tics, or paralyze him, especially if there is an activity he's excited about.
He has poor motor functioning, and after years of work, he can sink a basketball and get himself dressed. He has almost, but not quite, mastered writing his own name with a pencil. Typing has taught his brain and body to work together and improved his timing.
In an e-mail, I asked Jacob what it is like to have his body and his thoughts doing such different things.
"I hate all my tics," he answered. "I have a disconnect in my brain between what I'm thinking and the output. My typing is what I'm thinking and the verbal tics just come out. They aren't what I'm thinking about, but they are related in some way to the emotion associated with what I'm thinking about. So if I am thinking about feeling successful and flying, then the tics that come out may be from Disney songs that are related to soaring ... Maybe my brain goes to the right file drawer but just accidentally pulls out the file next to the one I want."