Waiting

Life can be difficult if you have Asperger’s syndrome. In their youth, Aspies are often bullied. They are, after all, “different.” They make people “uncomfortable.” Children notice those things and children can be almost as prejudiced as adults.

When grown, Aspies may have a hard time finding a niche. Many drift from one unsatisfying job to another, with periods of unemployment between—even without a recession.

Despite a brilliant mind and many talents, Ryo Kiyan was one of those. He was fragmented. He couldn’t get himself together. Not until he reached his forties did he decide that what he really wanted to do was make maps. He spent several years studying Geographic Information Systems (GIS), and acquiring a second Bachelor’s degree in geography. He already had one in American history. With those qualifications, he landed the first job he applied for, that of GIS technician with the Sullivan County Division of Planning and Environmental Management.

He was on his way. Life had finally opened up for him and he could join the human race. He made friends. He bought a new car. He had a job he loved. And then, in a relatively short time, it was all gone. Because of his Asperger’s. And a woman who felt “uncomfortable.”

He had thought that he and Miss M were friends. But when he tried to make an innocuous date with her, she froze. She may not have been as attracted to him as he was to her, but he hadn’t tried to come on to her. He only suggested dinner and a movie. At her apartment. He realized later that that was clumsy and inappropriate, but every time he tried to apologize and explain, she refused to talk about it. Wanting badly to mend the rift, he persisted, in his Aspergian way. That persistence frightened her. This was the woman who felt “uncomfortable” when Ryo looked at the books in her apartment.

Other Aspies have had the same problem. As Jesse Saperstein wrote in his autobiographical Atypical: Living with Asperger’s Syndrome in 20⅓ Chapters: “My persistence is so overbearing that girls misconstrue it as stalking.” Ryo never meant to frighten the woman. He had no idea wha happened, until he found out much later that she had taken to carrying a knife and pepper spray. He also learned that her fear made her cry. It astounded him and he told his family to stop criticizing her.

She reported the situation to her superiors, who ordered him to leave her alone. He tried to, in his way, but she was right there. He couldn’t believe he was supposed to ignore her existence. Aspies need their instructions spelled out concretely and in full detail.

In an e-mail, Ryo described what he felt was a major theme in the case, and that was his “idealism.”

As you know, we Aspies are susceptible to idealism. That is why we are frequently cited as being principled, and honest, and supporters of social justice. In our naiveté, we can latch on to visions of the way the world ought to be, which are generally the very same visions held up by society at large as the way the world is supposed to be: a world where everybody gets along, tries to be nice, tries to work for the common good, doesn’t hold grudges, etc.

 The NT’s [neurotypicals, or non-Aspies] say they want this world, but then they go ahead with all of their exceptions, and they tell you it shouldn’t bother you that someone you see every day hates your guts, and doesn’t want to talk to you, and thinks bad things about you that aren’t true. You don’t understand this, and the NT’s, in turn, are utterly baffled by your incomprehension. Not being true idealists, and not trying to picture the world in all its wholeness as a system that should be perfected in all its parts, they simply can’t understand why you would want to say “good morning” to someone who despises you. Not understanding that, they interpret your desire to get along with your enemies (I’ve often wondered—was Jesus an Aspie??) as something unnatural and dangerous. The only reason you could want to say hello to a girl who hates you is because you’re “obsessed” with her. Even people who try to be sympathetic with you (your psychotherapists, your lawyer, your sister) believe what amounts to the same thing. You’re “perseverating,” you’re trying to tie up loose ends in an impractical way.

 But the simple truth is, you’re just trying to do what they always told you was the right thing, which is to strive for what’s good, and which in this case is to get along with people. And when somebody you see every day feels threatened by you—when you know there’s no reason—and won’t even talk to you, that’s a pretty good indication that there’s something wrong. And wrong things need to be righted. And being a logical Aspie, you might liken it to somebody feeling threatened by people of a different skin color or religions. That would be wrong. It’s wrong to feel threatened by people when you don’t have a good reason, isn’t it?

Because he was half Okinawan, Ryo thought for a time that racial bias might have played a part in what was happening to him. He had yet to learn that the bias against Aspies, who make people “uncomfortable” simply because they are not like the majority, is even stronger.

The county served him with charges of harassment and a hearing was scheduled for late summer. He would be represented by Michael Sussman, a well-known civil rights attorney. Because his behavior toward Miss M was caused in large part by his Asperger’s syndrome, and Asperger’s is regarded as a disability, he felt that his rights as a disabled person were violated. In other words, in the eyes of Sullivan County, he had no right to have been born with Asperger’s.

To make that argument stick, Mr. Sussman urged Ryo to get a formal diagnosis, which he did, from a noted expert on autism. When the letter arrived confirming that diagnosis, he was elated. It explained so much that had gone wrong in his life. Many Aspies have felt the same way. Their problems finally had a name.

Ryo was ready to submit that letter to the designated hearing officer.  For reasons never explained, Sussman advised him not to do that. After the hearing, Ryo’s puzzled mother sent an e-mail to Mr. Sussman asking the reason for suppressing that information. She never received an answer.

Waiting for the hearing was stressful. Ryo spent much time on the Internet looking for answers and not finding them. He tried to relax by hiking in nearby mountains and taking pictures.

Self portrait on hike

Ironically, his job was drying up anyway. Due to budget cuts, the GIS section of the Sullivan County Division of Planning was to be abolished and its two members laid off. Ryo could only hope he would be reinstated long enough for an honorable lay-off.

The hearing lasted four days, from the end of August to the beginning of September. The county called several witnesses. Ryo had no witnesses but himself. His mother and sister attended but had to stay quiet. In any case, they weren’t actual witnesses. Once it was over, the final recommendation was up to Lynda Levine, Esq. She said it would take six weeks to reach a decision. It took longer.

In His Own Words

Recently I came across a book I had bought for something I was writing. It was Obsessive Love by Dr. Susan Forward. The title says it all and the attitudes and behavior it describes are appalling. What appalled me the most was that it seemed to echo Miss M’s take on what happened between James Ryo Kiyan and herself. The purpose of this blog is to emphasize that Aspies (those with Asperger’s syndrome) experience the world differently from non-Aspies. They should be viewed according to who they are and not judged by inapplicable standards. As my friend Jesse Saperstein put it in an e-mail, in cases such as Ryo’s there is a need to explain the difference between stalking and benign persistence.

Following is a letter Ryo wrote to the person who would be conducting his hearing. In it he describes his version of the events that led to the charges against him. Only the names of those involved have been changed. The letter is dated July 20, 2009, and titled Re: Disciplinary Charges against James Ryo Kiyan. Here is the text in its entirety:

To the Hearing Officer:

The following is my account of events in the above-referenced matter. My purpose is not so much to convince others that my perspective is the only right one, as it is to demonstrate that I am in fact an intelligent, thoughtful, and sensitive person, and that I am intellectually and emotionally equipped to make the adjustments in my behavior that will permit me to continue functioning successfully in my job as a GIS technician for the Planning Division of Sullivan County.

In January of this year [2009], I felt that Miss M and I were developing a friendship. The validity of this belief can be discussed elsewhere, if necessary. For now, I will only say that my interest in friendship was based on my admiration for her intelligence and spirit, my feeling that we shared similar beliefs and interests, my knowledge that she was in effect a recent arrival in the area who might be looking for friends with similar interests, and her own demonstrated friendliness and trust toward me.

In mid-January, on the heels of some friendly interactions that had included a luncheon date in her hometown, I made a very awkwardly-presented suggestion that we get together again for dinner and movies at her place. It did not go well. I am sure that all the excruciating details will be discussed elsewhere. For now, suffice it to say that as a result of that proposal, and my attempt to explain it in a letter the next day—and in a very brief conversation and e-mail the following week—I felt that a terrible misunderstanding had developed. I suspected that Miss M may have come to the erroneous conclusion that my interest in her had been primarily sexual or romantic. I do not deny that I would have been open to the possibility of romance (and, indeed, a cornerstone of the evidence against me has been my frank admission that I had had an “untenable crush” on her), but it was hardly an exclusive goal, and in fact, given my romantic track record, I figured that the most likely outcome of a friendship with Miss M would be friendship and nothing more—and I was happy with that prospect and looked forward to it.

But now it seemed that that prospect of friendship had been derailed by an apparent misunderstanding, and I became overly distraught. I do not intend to “make excuses” for why I was so upset, but I think that not only was it based in my great esteem for her and what I believed to be our developing friendship, but that my emotional fragility was greatly amplified by a “perfect storm” of extraordinary events in my own life, including my own recent year-long ordeal with colon cancer and related treatments, as well as my mother’s simultaneous treatment for breast cancer. In an escalating series of e-mails, letters, and attempts at conversation over the next three weeks (January 16 to February 9), I sought to clarify the situation with Miss M, but only succeeded in making things worse. While I believe that my first communications were not remarkable, at some point, for a brief period, I crossed a line, and there was no longer a rational connection between my level of urgency and the true situation. At the same time, my behavior was never sexual, threatening, abusive, or violent. It was not until February 5, when I asked Miss M to step out for a walk to discuss the matter, that I realized how averse she was to engaging in a dialogue. In a scene that I have always deeply regretted, I essentially began begging her to talk to me. Failing to initiate a dialogue, that night I sent her a long e-mail which was the beginning of a rambling monologue conducted over the next three or four days via e-mail and hardcopy mailings of the same e-mails. I soon realized that I had gone too far, and admitted such in an e-mail sent in the early hours of Sunday, February 8. Horrified by my own behavior, I called Helena [one of Ryo’s two close friends at the office] that evening, practically in tears, and asked for her help.

Deeply ashamed of myself, and wanting to give Miss M some breathing room, I did not go to work the following Monday. When I did go to work on Tuesday, I discovered that Miss M’s work station had been moved to the other side of the office, and I found myself further distraught by this tangible and irrevocable mark of my disgraceful behavior. On Wednesday, I initiated a meeting with the Commissioner to discuss the situation. My recollection of that meeting is that he wished to avoid something called an “EEO investigation” and wanted to handle the situation within our department, and I now believe that he also mentioned that I should refrain from sending Miss M any more e-mails of a personal nature. The one concrete directive that I took from that meeting was that I was to “cc” him on any e-mails that I did send her.

In the following days, I came to realize that my relations had been damaged not only with Miss M, but also with Helena and Jayne, two people whom I held in the highest regard and whom I thought of as friends. Over the course of the next several weeks, I alternated between deep despondence about my ruined relations with my three coworkers and a hope that I could win back their esteem and trust. Jayne, at first, seemed to be the least affected by events, although she became increasingly critical of my work, which I attributed to lingering resentments. Helena was chilly toward me, but over the weeks started to seem more like her old self. Miss M often acted like a complete stranger, but at other times I drew encouragement from a seemingly genuine smile or a thoughtful response to a question I had posed to her.

Toward the end of March, Eric [an office friend] sent around a notice about an upcoming concert. As he had done on one or two prior occasions (when sending out announcements of cultural happenings in his neck of the woods), he addressed the e-mail to an exclusive group consisting only of Jayne, Helena, Miss M, and me. As far as I knew, Eric did not know anything about the troubled relationship between me and the three others. I was at once honored to be counted as part of such an exclusive and estimable club, and guilty that I was the reason it was essentially a lie. I also felt bad about the possibility that Miss M’s lingering uneasiness about me might hinder her full social integration into “our group.” Prior to the troubles, I had noticed that Miss M kept to herself and rarely, if ever, joined coworkers for lunch or walks. I attributed this to shyness and perhaps to financial difficulties, but assumed that with time it would change. But now I worried that I myself, because of my terrible behavior a few weeks earlier, was an obstacle to the development of Miss M’s social bonds with her coworkers. I therefore decided it was time to break the ice, and make a gesture that would demonstrate my belief that she could function as part of the same social group to which we both seemed to belong. I handed her a short note inviting her to the concert, and indicated that Eric was going, too. A couple of days later, she told me only “no thank you.” Sensing a chilliness in her response, I felt there was little more I could do than to extend an open offer of friendship that would be redeemable “in perpetuity.” I wrote a long letter to that effect, and handed it to her (March 30), preceding it with an e-mail in which I attempted to explain that the unusually long letter was not written in the same spirit as the rambling e-mails of early February.

Of course, it is now quite evident that she—and everyone else—felt that the communications of late March were indeed a continuation of the earlier behavior. To my mind, it was different because my earlier correspondence had been needy and desperate, begging for a dialogue to work out an apparent misunderstanding. Now I was proceeding from the observation that I had screwed things up so badly that all I could do was start over from scratch and let my coworkers know that I had nothing but positive feelings and was looking forward to building friendships.

It is now painfully evident that my way of thinking about friendship and social belonging does not make sense to most people. In the long term, I hope that I can improve my understanding of social interaction by working with experts and by practicing and growing outside the workplace. In the short term, I am confident that I can avoid any further troubles on the job by clearly identifying the issues and situations that have led to problems, and avoiding them in the workplace. I believe that these issues are the pursuit of friendship and social belonging. While it should seem odd for a person to swear off the possibility of making friends at work, I realize that the horribly painful events of the past six months demonstrate that in my case, it is entirely warranted. Essentially, my conscious pledge must be, and is, to maintain a polite and professional social distance from my coworkers, which I will balance with a commitment to improving my ties to family, friends, and community outside of work.

It is my hope that by recounting events honestly, and clearly expressing my awareness of the problems at issue, I can demonstrate that far from being out of control, I am an intelligent and sensitive person who truly wants to do well toward others and be respectful toward them, and that therefore I am fully qualified and capable to remain in my job and perform its duties.

Sincerely,

James Ryo Kiyan

Into the Fire

They boycotted his birthday; that is, some of them did. As the office festivities began that March day, the two women whom Ryo Kiyan regarded as his closest friends (not Miss M) walked out and did not return until the party was over.

Later, when the outside attorney hired by Sullivan County for this case interviewed employees in the Planning Division, he reported that the women were “afraid” of Ryo. In his brief, he went all out: “Kiyan made unwanted advances only toward [Miss M] and other female employees. His efforts were pervasive, continuous, unwanted, and in direct violation of directives from his supervisor and rejections by Miss M.”

Ryo felt sickened by the description. It wasn’t him. Was that really how they saw him? Unwanted advances? Toward his married coworkers? Or was it a matter of prosecutorial hyperbole? He decided that had to be the case.

The attorney, Mr. J. S., Esq., didn’t stop there. He leaned hard on the fact that Ryo’s friends at the office were almost exclusively women. In a way, it was true. Those three women were the ones who sat closest to him. They were friendly, he was shy. It all came about quite naturally, until his whole world fell apart. At that time, in his frustration over Miss M’s rejections, he turned to his “friends,” hoping they could intercede and plead his case with her. They, in turn, felt uncomfortable being drawn into the situation and advised him to back off. He might have, if only he could have gotten through to her, even once. He knew she wanted nothing to do with him. He promised never to bother her again, if they could have that one conversation and clear the air.

At the end of March he handed Miss M a handwritten note with the title “An Invitation to Walnut Mountain.” Ryo enjoyed hiking and knew she did, too. She had once told him she hiked quite a bit when she lived in California. He knew Walnut Mountain Park was not yet open for the season, but people went there anyway. He assumed the term “closed” meant only a lack of facilities, such as restrooms, and he promised to inquire about that. He had hiked at Walnut Mountain and enjoyed it. He thought she would, too. He suggested she bring her dog. He always thought it would be fun to hike with a “real” dog. The family canines tended to run small: Pomeranians and Pekingeses. They were not “real” dogs and often had to be carried on long walks.

Miss M saw the invitation as a threat. She could think of no good reason why he would want to take her to a closed park. Therefore, it had to be a bad reason. She became “upset and frightened.”

By her own description, she had been “upset and frightened” since the e-mails began in February. At the hearing, she testified:

I started carrying pepper spray all the time, carrying my cell phone in one hand and my pepper spray in another hand every time I entered and left work. I started always locking my door, locking both my inside door and my outside door to my apartment every time I left. I started to carry a knife . . . I began parking in the parking lot here at the Government Center so that I could always see Ryo’s vehicle when I pulled in, and then I would scan the lot and make sure he wasn’t in the parking lot when I got out of my car. . .

Ryo’s vehicle, a bright blue Honda Fit, would have been hard to miss. It was the first new car he ever owned, bought when he began working for Sullivan County. He never thought of it, or himself, as a menace.

One might reasonably wonder why he kept up the campaign when his attentions were clearly unwanted. It was a classic vicious circle. In his e-mails he pleaded with her for understanding. That was all he did: he pleaded, never threatened. Later he thought of it as pathetic. The more she rebuffed him the more he feared her negative opinion. He wanted her to understand that he was not a bad person, that he had only good thoughts of her. Likewise, the more he persisted, the more she feared him. And so they went round and round, only making things worse for themselves and each other.

Other Aspies have been there, too. In his book Atypical: Life with Asperger’s in 20⅓ Chapters, Jesse A. Saperstein writes: “My persistence is so overbearing that girls misconstrue it as stalking.”

Because she was single and attractive, it was logical that he should choose Miss M for his attentions. It was also unfortunate. Not only was she easily terrified, she also had strong family connections with various Sullivan County law enforcement personnel. Ryo despaired that his family had no local connections at all. And no attorneys but a second cousin in New York City whose position prevented him from offering advice. He had no support but that impotent family of his. Even his “friends” at the office sided with Miss M and told him to back off.

Which he did, or thought he did, but the juggernaut was rolling. It began with a summons to the county attorney’s office, where he was treated to a two-hour lecture. Rather, it seemed to him at the time, not so much a lecture as a tirade. At top volume. In the course of it, Ryo mentioned that he had Asperger’s syndrome. When asked if the condition had been formally diagnosed, he was forced to admit it hadn’t. He remembered the attorney saying that that “might make a difference.” As it turned out, it didn’t, for a peculiar reason we will come to in a later post.

In May 2009 the dam, which had been crumbling, broke. Ryo went to work as usual, suspecting nothing. Shortly afterward, two sheriff’s deputies appeared and marched him out of the office. “Escorted,” as his coworkers later said. It took two deputies, as though he might bolt. Or throw punches. Or whatever they were thinking. They made a point of not wearing uniforms but everyone knew who they were. No one missed what was happening.

From there, the county sent him home. They sentenced him to a month’s suspension without pay, to be followed by two months’ suspension with pay until the hearing. He was to have no further contact with any of his coworkers. It meant canceling out of the canoe trip that he had looked forward to so eagerly. Worst of all, it meant uncertainty.

In true Asperger fashion, he still didn’t comprehend the effect he had had on his coworkers. In spite of the trauma and humiliation, he wanted his job back. He talked of it constantly: “If I get my job back. . . .” For that, he needed someone to represent him at the hearing. He tried two attorneys, neither of whom was notably helpful. Still hoping, he went for broke. He hired Michael Sussman, a noted civil rights lawyer based in nearby Goshen. And broke he would be, when all was finished.

Out of the Frying Pan

A recent article in Cure magazine (Spring 2011) discusses the phenomenon of  “chemo brain,” that fuzzy and forgetful state that sometimes follows a course of chemotherapy. According to the article, most medical personnel have rejected the notion that chemo brain actually exists. Only those who suffer from it are convinced of its reality.

Ryo Kiyan couldn’t tell whether it was real or not. All he knew was that, after six months of chemotherapy, he felt different. Not forgetful. His brain worked all right. But things weren’t quite the same. It all felt indefinably—well, different. He had been through surgery, and went right back to work afterward, not wanting to jeopardize his job. Then followed the half year of chemo.

Every three weeks, for a week at a time, he reported to Catskill Regional Medical Center for the infusions. People warned him that he should arrange for transportation while being treated, that he would be so ill and groggy he shouldn’t drive himself. Rather than be dependent, he asked the oncologist to go easy on whatever sedative they added to lessen the discomfort. He wanted to stay awake both for driving and for work. His fellow staff members knew he was being treated, but only one, who had been through it himself, really understood the physical and emotional toll. Ryo had a double trauma when his mother, with whom he was living, developed cancer at the same time.

And so he “walked through the valley of the shadow of death” and, though weakened and changed, came out on the other side. He felt it was those changes, the emotional wreckage and possibly chemo brain, that contributed to what happened later. He described it as having “lost his way.” Added to that was the inherent nature of Asperger’s syndrome. 

At the time he finished his chemotherapy, in September of 2008, a new employee was added to the staff of the Sullivan County Division of Planning. She was Miss M—young, attractive, and single. Nearly all the other women in the office were married. She was also sophisticated, intelligent, and, he felt, on the same wavelength as he in many respects. Since her work station was next to his, they frequently engaged in small talk.

By January he felt recovered enough from the cancer, and had a solid job with a decent income, so that he wanted a place of his own. He knew Miss M had her own apartment and asked if she knew of any others in the area. She offered to introduce him to her landlord. Following that meeting, the two had lunch at a historic old inn, then afterward went to Miss M’s apartment. While she was engaged in another room, he passed the time looking at the books in her living room. To him, it seemed a normal and usual thing to do. He didn’t feel that he was prying, but later Miss M testified that it made her “uncomfortable.”

It’s quite possible that he was what made her uncomfortable. Many people have that reaction to Aspies and they couldn’t possibly tell you why. It’s just “something” that makes them “uncomfortable.” They would prefer that everybody be exactly like themselves. That attitude, in turn, makes the Aspie uncomfortable (yes, Aspies have feelings, too), and from there it can only go downhill. In Ryo’s case it went very much downhill.

He enjoyed that day with Miss M. He liked the old inn and suggested they explore other such places. He remembered her saying “Yes, definitely.” She remembered not wanting to agree but, since they worked together, felt it would be rude to refuse and so she gave a reluctant “yeah.” In his Aspie way he failed to pick up on her reluctance and thought she shared his enthusiasm.

An Aspie can be a lonely person and may assume that a friendship exists where there really isn’t one. He, thinking they had gotten along so well, suggested that he visit her apartment, cook dinner for her, and they could watch a movie together.

Miss M was stunned and could barely stammer. At the hearing later that year, much was made of the fact that when he approached her, she was alone in the copy room. The truth is that in choosing this venue he had no sinister intentions, but only felt it was a private conversation and he didn’t want to shout it out to the office. We do understand that the implication of sinister intentions was deliberate, intended to bolster the case against him.

Ryo walked away from that encounter but soon came back and apologized, saying he realized his suggestion had been “inappropriate.” He was, however, still interested in visiting old inns with her. He hadn’t caught on that this was merely a casual acquaintance and not the deepening friendship that he thought and hoped it was. He was also quite attracted to her and, in a straightforward Aspie way, told her he had a “wicked and untenable crush.” When that brought no response he tried again. He handed her a letter once more apologizing for his behavior and saying he was “not usually a terrible person to work with.” That time, she answered, “I don’t think you’re an awful person to work with. I just want to keep it professional.”

Keep what professional? He really didn’t understand what was going on with her. All he knew was that someone he liked, respected, and regarded as a friend suddenly turned a cold shoulder. He wanted to know why and he wanted to fix it. She, in turn, didn’t understand that he didn’t understand. She thought she had made it plain, but to him, it wasn’t. A mediation session at this point might have cleared things up, but it wasn’t the bureaucratic way. He did point out that he had Asperger’s, but because at that stage it was only a self-diagnosis, no one took him seriously. Even if they had believed him, they probably wouldn’t have known how that could affect his thinking and behavior. Most people don’t, which is the reason for this blog. 

A few days later he tried e-mailing her:

I didn’t finish my apology on Friday. I just want you to know that I really, really, REALLY have come to my senses! I see now that my very silly behavior was the result of various personal issues that I have no business troubling you with.

Again she did not respond. He still wanted to talk things over, to apologize and get her to understand that he was an honorable person with honorable intentions. Only much later, when it was all over, did he come across an article that gave him some enlightenment as to what she felt. The article explained why such relentless pursuit can be frightening to a woman. Gavin de Becker makes that point in his book The Gift of Fear. De Becker says that while a man can worry that women will make fun of him, for women the fear is of violent assault and rape. Miss M had no way of being assured that Ryo was a gentle, peace-loving Aspie who only wanted a friend. There again, a mediation session would have helped both of them. Unfortunately, the powers that be chose another route.

A Bright Future. Maybe

Los Angeles was the place to be. On Thanksgiving Ryo called home to frozen New Jersey to report that he was sitting by an open window and it was 79 degrees outside. Later, when circumstances forced a move back east, he thought longingly of that climate as he shoveled snow.

His best friends in L.A. were his cousins, Sharleen and Jaimee. At that time, Ryo knew only that he was shy and awkward. He had no inkling yet of Asperger’s. Nor did the cousins. Sharleen wrote later, “Ryo was a loving, sensitive, caring person. His reality was a little different from the norm but that is what made him unique.”

With that observation, His reality was a little different from the norm, she captured the essence of Asperger’s although she had probably never heard of it.

As for sensitive and caring, she told this anecdote:

Ryo and I shared many moments and I loved him a lot. He was kind and sensitive. One night he and I heard these cries through the apartment vents and went down to the basement to see what the heck was going on. We found a litter of kittens (I believe 3) and he said, “Shar, we need to take them upstairs.” (Me, I’m thinking, ah man, fleas, disease, what towels can I sacrifice to these baby kittens and how long will I have to keep them until we find them a home?) Anyway, I finally caved in and to see him so gentle and caring was worth it all. He fed them, cuddled them, and then took them to the pound.

Ryo always loved animals. He had grown up with dogs and sometimes cats and for a while had pet chameleons. He found animals uncomplicated, non-exasperating, and far easier to get along with than most humans. Animals he could understand. They didn’t say one thing and mean another, and had no hidden agendas. They were, in fact, good people.

In Los Angeles he studied Geographical Information Systems at Santa Monica College and took an apartment with a relative by marriage. It seemed ideal, but turned out not to be. He and the relative did not get along. The situation became so fraught that Ryo thought of moving out and living in his car. His mother, who had left New Jersey and lived in the Catskills, suggested he come back east and stay with her while he studied. That had a certain rent-free appeal, and so in mid-January he crossed the continent again.  

For that spring he worked at a temporary office job, then enrolled in Ulster County Community College to finish his GIS studies. With no other degree than a bachelor’s in American history, he still considered himself unprepared. It didn’t feel like a solid basis, and so he entered the State University of New York at New Paltz and spent another two years earning a second degree, this time in geography.

The hard studies paid off. He landed the first job he applied for, as a cartographer with the Sullivan County Division of Planning and Environmental Management.

He was on his way. He regretted the wasted years of indecision, but with this job, the first one that really meant something to him, his life had finally come together. He enjoyed the work. He made friends, or so he thought. The high point was a Fourth of July weekend spent at a coworker’s home, that included a canoe trip on the Delaware River. He looked forward to many more such events, now that he finally had a life. He was in his early forties. He might even have a real life from now on.

But there were signs that all was not well. For a long time he resisted those signs. After all, he was young(ish) still. He couldn’t be sick and didn’t want to be.

Nevertheless, he was. He had cancer.

Higher Education with Asperger’s

At a school such as Stuyvesant there were many bright oddballs and Ryo had a few good friends. He also had crushes on several girls and made no secret of it. One in particular he admired, not only for herself but because she spoke Malayalam, a language of southern India. He liked the sound of the word “Malayalam” and spoke it with an Indian accent. He sent her notes referring to her as “my wife.” Being a good sport, she took his social clumsiness in stride and they remained friends. A buddy of hers became his first steady girlfriend the summer they graduated from high school.

Ryo entered New York University and for a while considered a career in anthropology. At another time he thought briefly of studying medicine. Nothing really grabbed him. Instead, he suffered such inner turmoil that midway through his second year at NYU, he dropped out. Everything felt wrong. His whole life was uncomfortable, as though it didn’t fit him, or he didn’t fit in the world. A therapist he saw during that period noticed that Ryo had some autistic traits. Ryo stubbornly refused to continue the therapy. As if the Asperger’s weren’t enough, his stubbornness was an additional curse that went on plaguing him.

When that dark episode passed, he transferred to Grinnell. It was in Iowa, he could live away from home, and that was good. He began his studies with great hope but again fell apart. Later he admitted he had been doing drugs. He frittered away another year or so working at various odd jobs or doing nothing at all. Once more he pulled himself together, gave up the drugs, and went back to Grinnell.

Ryo at Grinnel

There he had good friends and, now and then, a girlfriend. He was appreciated for his humor and sense of fun. He and his roommates named their dormitory “Asian House,” although he was the only Asian there. His ancient car became the “Schlub Mobile.” One friend later wrote:

I can’t remember how many times the Schlub Mobile drove the I-80 Grinnell shuttle [to New York] but each trip was filled with adventures and mishaps. One freezing cold night drive, we found our way down to the banks of the Mississippi River and collected a large piece of ice and transported [it] on top of the Schlub Mobile. We hauled it all the way back to NY just to drop it in the Hudson River. We both thought it was a hilarious idea to transport water from one drainage system to another.

 Another friend wrote:

 I remember Ryo as a quiet, deeply intelligent person with a puckish sense of humor . . . enigmatic, unpredictable, ephemeral . . . months with a full beard then clean shaven the next day without comment. A burst of words and ideas for 30 seconds followed by 45 minutes of silence.

 Aspergians tend to be honest, straightforward, and without guile. Even as a grown man, Ryo retained a childlike innocence. It wasn’t in him to put on airs or try to impress. The mother of a college friend wrote:

 I remember so well how good and kind he was with our two grandchildren. I recall how on the evening of July 4 we had gone to watch our little town’s fireworks. Our group sat at the top of a 30 foot knoll to watch. Holden [her grandson] got bored waiting and proceeded to roll down that hill and who should join him but Ryo. This went on for a good while, roll after roll. It must have made Ryo quite dizzy but he kept it up for the fun it was giving Holden.

Ryo graduated from Grinnell with a degree in American history. It was what he enjoyed, but not very useful for landing a job. He returned to his parents’ home, by then in suburban New Jersey, and worked at what he could find.

 His Asperger’s and his shyness didn’t help. During the summer he applied for a job with a landscaping company. When asked what heavy equipment he could operate, he was at a loss. He had never driven a tractor or a backhoe but was paralyzed at the thought of admitting it. Yet he couldn’t lie. The Asperger’s wouldn’t allow that, so he stood tongue-tied and mortified. This echoed  years later after he lost his job with Sullivan County under charges that he felt were slimy. He knew he had to admit being fired, but how to explain the reason? He despaired of ever finding another job, although he tried for more than a year.

 That, however, was still to come. Meanwhile, feeling at loose ends, he left New Jersey and set off for Los Angeles, where he had relatives. There he found work as a legal secretary. He made good money but, in spite of his father’s encouragement, had no interest in pursuing law as a career. Ryo found an apartment in Sherman Oaks and was there when the Northridge earthquake hit. It broke all his dishes, but he survived.

 Not because of the earthquake, but still hoping to find his niche, he moved back across the continent to Washington, DC and worked again as a legal secretary. Meanwhile he asked himself what his real interest was and decided it was maps. He resolved to study a fairly new technology called Geographic Information Systems, or GIS.

 One problem: There was no place in the DC area where he could take night courses, and he couldn’t study in the daytime because he had to work. He went on the Internet and found that if he returned to LA, he could take evening courses at Santa Monica College. It might all have worked out but for an unfortunate living arrangement.

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 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.

No Justice for Aspies

Not long ago, Orange County, NY, dismissed a man from a volunteer position he had held for many years. The grounds for dismissal? Another employee complained that James McElwee, age 35, “violated her personal space” and made her feel uncomfortable 

No details are available on what constituted that violation. All we know is that McElwee has Asperger’s Syndrome and many people feel uncomfortable, even threatened, in the presence of someone who’s a little bit different. Aspergerians have limited social skills and don’t always realize the effect they are having on others. McElwee himself has no recollection of any problems with that coworker. He was warned to stay away from her, and he did—by not going to work for a week. At the end of that week, they dismissed him. 

Even though the job was volunteer, it meant a lot to him. He was a custodian and general helper at a nursing home and he liked interacting with the residents there. The work made him feel useful. It validated his existence. He had been there nine years. He felt so much a part of the home that he returned a week later to sing Christmas carols with the group. A security guard barred his way. He was no longer allowed on the premises.

In a suit against the county, attorney Stephen Bergstein pointed out that its action violated the Americans with Disabilities Act. It failed to take into account the fact of McElwee’s Asperger’s syndrome, and how it can affect a person’s perception and behavior. The incident is especially ironic because the job came under a countywide program designed to assist “disabled volunteers in that it improves their self-esteem” and allows them to be part of the community by providing valuable services to elderly and infirm persons. The suit is still pending.

At the same time, in a neighboring county, another James with Asperger’s syndrome lost his job for essentially the same reason. He made someone “uncomfortable.” The charges against him did not state this specifically but that was how it all began.

His name was James Ryo Kiyan. He was usually known as Ryo, a Japanese name. His paternal grandparents came from Okinawa.

Ryo worked as a cartographer with the Sullivan County Division of Planning and Environmental Management. He did his work well and his maps can still be seen in various parts of Sullivan County. But because he had Asperger’s, he failed to grasp how other people saw him. The other people, in turn, couldn’t understand how he saw things. As many Aspergerians have said, it’s as if they’ve been set down on the wrong planet. If Planet Earth seems strange to them, theirs is all but incomprehensible to Earthlings, otherwise known as neurotypicals, or NTs.

James Ryo Kiyan

 Because NTs are in the majority, they get to make the rules. As we pointed out in a previous post, this all too often works to the disadvantage of Aspies. It’s sort of like a culture clash, with neither side able to understand or relate to the other. Like James McElwee, Ryo was warned to stay away from the complaining coworker. He asked for details on how he could avoid someone he saw every day, with whom he had to interact in his work. Instructions for those with Asperger’s must be clear and concrete, but no one understood that. To them, his asking seemed impertinent and was another strike against him.

He was shocked and humiliated one day when two sheriff’s deputies came to escort him out of the office in full view of his coworkers. The show of force was unnecessary. He was a peaceable man and would have gone anywhere they asked. They sent him home on suspension.

They said there would be charges and a hearing. He still didn’t know what he had done that should call for such a reaction, but he retained the services of a civil rights attorney. Little did he know that the complaining coworker had built up such a tale of terror that she took to carrying a knife and pepper spray, and watched every day to see where he parked his car. She may have had issues of her own. He would never know. But those who followed the case suspect there was more to it than met the eye.

 For more on this case, how it developed, and how it inspired a young adult novel currently in the works, stay tuned.

Dr. Asperger Himself

Hans Asperger was a pediatrician and psychologist in Nazi-occupied Austria. His specialty was a group of high-functioning autistic children whom he called “little professors.” They had, he observed, certain traits in common. Among those were a brilliant mind, an extraordinary vocabulary, and a lack of social skills. They could become obsessed with the workings of physical objects but were flummoxed by the workings of human society.

 The Nazi machine, with its notion of the “ideal man,” had no use for such oddballs and slated those children for destruction. Because of their high intelligence and their ability to focus on details that other people missed, Dr. Asperger insisted that they had a value of their own. “Not everything abnormal must be defective,” he wrote. “Autistic people have their place in the social community and fulfill their role well, perhaps better than anyone else could.”

 There are people who say Dr. Asperger himself must have been a Nazi because he lived in their place and time and played ball with them. But he didn’t play ball with them. He merely convinced them that his “little professors,” with their special skills, could be especially useful in such areas as codes and engineering. He convinced them to the extent that the children’s lives were spared.

A World of Aspies

What would the world be like if everyone obeyed the laws and rules, if we were all polite and honest with one another, if no one had a hidden agenda, and no one was motivated by greed or self-aggrandizement?

This is a world described in the introduction to a book called The Myriad Gifts of Asperger’s Syndrome, by John M. Ortiz, PhD. And yes, it’s a dream world peopled solely by an underrated segment of the population: those who have Asperger’s Syndrome. If Asperger people ran the world it undoubtedly would be very much like the Eden described by Dr. Ortiz because that, by and large, is the way they are.

Asperger’s is a form of autism and as such is regarded by most as a disability. People who aren’t autistic are labeled “neurotypical,” usually abbreviated to NT. Because NTs are in the majority, they get to decide what’s normal and what isn’t. This works to the disadvantage of Aspergians who, thus far, have not risen up in protest against the labeling, the injustice, and the prejudices they so often suffer.