Growing Up with Asperger’s and Not Knowing It

Ryo Kiyan had reached his forties before it occurred to him that he was more than just shy. It took a lot of research but he finally figured out what was making his life so difficult. It was Asperger’s Syndrome.

At the time Ryo was born, in 1962, people really didn’t know much about autism. I remember my mother, an educated social worker, referring to it as “childhood schizophrenia.” It really isn’t the same thing at all, but people didn’t know that then. In fact, it is not confined to childhood. If you are autistic, you are there for life. All you can do is try to deal with it, and new ways of doing that are being developed.

Ryo was born in New York City on March 13, 1962, a full-term baby weighing in at 8½ pounds. He was the first child of Yoshio Kiyabu, a travel agent of Okinawan descent who was born and raised in Hawaii, and Caroline Crane Kiyabu, a novelist from suburban New York. As was customary among sansei (third-generation Japanese children), Ryo was given an American first name and a Japanese middle name. His first name was Crane, after his mother. She felt awkward calling him that and he didn’t like it either, so he was always Ryo. Because he also didn’t like the “bu” ending on Kiyabu, at the age of 18 he hired a lawyer and had his name changed to James Steven Kiyan.

He quickly realized that “Steven” had nothing to do with him and “Ryo” was his identity, so he changed it again to James Ryo. He kept the Kiyan, which is more authentically Okinawan. “Kiyabu” is the way the Japanese read the ideographs that spell the name which, according to Ryo’s father, mean “happy house warrior.”

Ryo and daddy

Ryo grew up in a large (rent-controlled) apartment on Manhattan’s Upper West Side. When he was three weeks short of his second birthday, a sister, Laurel Rei, was born. At the age of three, Ryo entered a Montessori nursery school, where he made one good friend, a girl. She was definitely the more assertive of the pair. Many years later Ryo unearthed an old report from that school. In it was a clue to his Asperger’s, which went unrecognized at the time because there was nothing to connect it to:

Ryo is a rather unique child in that he can be so very withdrawn from the people and things around him. At times it is like he is in another world. At the same time he is very perceptive and sensitive in his observations.

 His first years of elementary school, at P.S. 75 on West End Avenue, were turbulent, partly because of two prolonged teachers’ strikes, and partly because sitting at a desk was a new experience and he didn’t take to it well. Many little boys have that problem. He did have some friends in school and a few in the neighborhood. Except for some summers at day camp he did not play outside in the street or in the park as most children do. Often he would spend a week at a time in the apartment studying things of interest to him, such as maps or languages. He only went outside with his family for weekend jaunts in the car. Very early he developed a taste for touring historic old houses. He also spent time at his grandparents’ house in the country, where he was happy going off by himself and enjoying nature. He retained a taste for this all his life.

Ryo at 3

Ryo in the country

Despite his lack of sociability, Ryo was never short on brains. He passed a rigorous exam to enter Stuyvesant High School, one of the very few special public schools in New York City. It emphasizes math and science, but he also had an aptitude for languages—he studied French and German—and perfect pitch when it came to music. He played a trumpet in the school band. He was an expressive writer and a talented artist as well. Oddly, he never aspired to any of those activities professionally. Ambitions came in flashes, first one thing and then another, but in spite of great potential, he had no real focus. For several decades he couldn’t seem to pin himself down and decide what he really wanted to do with his life.

5 thoughts on “Growing Up with Asperger’s and Not Knowing It

  1. This is such a great story–I can’t wait to see what else happens!

    I have a daughter with autism. She is very high-functioning with lots of Aspie characteristics, and she sounds a lot like Ryo: very talented but with lots of trouble focusing, very withdrawn, transient obsessions. She’s still young, though–only 11–so I’m hoping we still have time to solve some of those problems.

    Wouldn’t it be great if NTs knew more about this, so they could be more tolerant and approach the problems more effectively? I hope your blog helps with that!

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