Living with a shadow syndrome

In 1998, John J. Ratey, M.D., and Catherine Johnson, PhD, published Shadow Syndromes: The Mild Forms of Major Mental Disorders that Sabotage Us. In the book, the authors define shadow syndromes as forms of a mental disorder that are so mild as to escape diagnosis, yet can profoundly affect a person’s life. Someone with a shadow syndrome of, say, autism might be seen as odd, but hardly anyone would suspect that they are actually in need of help. They might instead be perceived as having a character defect—something that is inherently a part of their makeup, and therefore blameworthy.

In retrospect, I’m sure that in the first few decades of my life I was often perceived as odd, if not worse. In fact, my voice teacher once told me that a student of hers who had encountered me in the hallway had asked her “Who’s that odd girl?” Apparently this was meant to impress on me how far outside the norm I was in my ability to interact with others. My reaction was to wonder why on earth anyone would say that about me. I guessed he must be odd, and I wondered why my teacher would give such importance to his remark.

At another time, my voice lesson was stalled while my teacher tried to force me to admit that I had a communication problem. I had no idea what that meant, and for some reason it didn’t occur to me to ask her. But I wasn’t going to agree to something that I didn’t even understand, and doubted was true. This was just one of many failures of communication we had, but it wouldn’t have occurred to me to identify them as such, let alone attribute them to some deficiency on my part.

Author Tim Page said in his memoir, that he had once thought if he published his life story he would have to title it, Sorry, Everyone. Instead, he called his memoir Parallel Play, a reference to his relationship style as a child with Asperger’s Syndrome. That phrase might also be an apt metaphor for my efforts at childhood friendship. But Sorry Everyone, would definitely be an appropriate title for my own memoir.

It occurs to me that maybe one of my problems was delayed empathy. This may have been partly due to lack of awareness or sensitivity to my own feelings. My emotional life up until adolescence was virtually a blank, as far as I can recall. Once at age eight or nine I was with my same-age cousin, Ralph, heading up the street when his younger sister came running after us, crying. She wanted us to wait up for her, and I didn’t see why we should. “Don’t you feel sorry for someone who cries?” said Ralph, turning to wait for his sister.

It was an arresting question—one I had never considered. I remember feeling some shame at the awareness that perhaps there was something fundamentally wrong with me. But the incident was soon forgotten, and the question left unanswered.

Physical injury rarely brought me to tears, and I wasn’t encouraged to feel sorry for myself when hurt, though I was always given comfort. Perhaps that was why when a younger child fell off a desk in First Grade I reacted with laughter, which brought me a sharp scolding from her older sister. It simply hadn’t occurred to me that she might be hurt (she wasn’t). But I wonder, was that a normal reaction for a six-year-old girl? A similar incident occurred when I was in college and from a short distance, saw a classmate fall in a hallway. It never occurred to me to approach her and ask if she was okay. In retrospect, I remember that she appeared in some degree of at least temporary distress, though this didn’t register with me at the time.

There were certainly many times when my behavior as a young person must have seemed at least ungracious or tactless, if not downright antisocial. At other times my actions must have seemed strangely inappropriate. The fact is, I simply had failed to acquire basic social skills and comprehension during my childhood and adolescence.

Having high verbal intelligence, I was able to compensate for my lack of social skills to a certain degree. Some people found me interesting or entertaining, while others seemed to sense some admirable character traits in me. So I had enough positive interactions with others to reinforce my belief that there was nothing essentially wrong with me, even if I felt socially awkward at times, and realized I might be a bit eccentric.

Though I had a few good friends in grade school, high school was a different story. One of my best middle-school friends accompanied me from our small, private school to this 1,500-student public institution. But during our freshman year we drifted apart. She made new friends, while I did not, and my failure to conform to the expected norms brought me her mild disapproval.

As I became increasingly isolated at school, I took refuge in fantasies about rural life in America, especially as it existed in Appalachia in the 1930s and 40s. After reading Jean Richie’s memoir about growing up in rural Kentucky, I suggested to my mother that we could play hide-and-seek at our next social gathering. I became a huge fan of the original Carter Family—sometimes called the grandparents of country music—and began dressing in some approximation of depression-era clothes in an effort to copy their style. On a trip to the shoe store I chose what the salesman said were old ladies’ shoes, because I favored their round toes and Cuban heels. When I showed them off to my middle-school friend, she replied sardonically, “Well, if you like them, that’s what counts.”

Fortunately, at the High School of Music and Art most forms of eccentricity were accepted, so being different didn’t necessarily mean social exclusion. (One young man whom I greatly admired came to school every day in a three-piece pinstriped suit, with a bow tie and spats.) By the end of my junior year I had discovered a group of classmates with whom I felt I might fit in. They were mostly opera fans, and all talented singers in their own right. Suddenly my focus shifted from folk music to opera and operetta, and I began to copy the style of the more flamboyant of my female role-models, sporting shawls and dangling earrings.

My efforts to be noticed and accepted by this group were met with kindly condescension, at best. I responded by imitating the appearance of the member of this group who most impressed me, a young woman of somewhat fierce demeanor. This caused me to adopt a rather unnatural posture—shoulders back and chest out, with my weight on my heels—and a facial expression of what must have looked like defiance. It occurs to me in retrospect that my idol’s posture may have been symptomatic of a back problem, while her fierce expression may have reflected some hidden insecurity on her part.

As I entered the workforce and began trying to launch a career, my lack of social skills must have hindered me more than I’ll ever know. Sometimes, though, I was painfully aware of my deficiencies. I would agonize over how to address someone in a letter. Should I address them by their first name or as Mr. or Ms. so-and-so? I hadn’t a clue, and would be temporarily paralyzed into inaction. If I didn’t receive an answer I was sure it was because I had made the wrong choice.

On more than one occasion I received permission to give a concert in a church or museum, taking advantage of a personal contact. It never occurred to me that I should write them a nice note thanking them afterwards, but these failures still haunt me today. Once I made the mistake of calling a choral contractor after 9:00 PM, on what was presumably her home phone, hoping for an audition. Her annoyed and incredulous response left me feeling that this avenue would likely be closed to me forever.

Much later, when I was in my forties, I was fired from a job for not having “the interpersonal skills to move projects forward in a timely manner.” It hadn’t occurred to me that moving projects forward had anything to do with interpersonal skills. But I did remember certain staffers reacting badly to my requests for information I needed to do my work. Apparently there was a certain etiquette involved in knowing how and when to ask for things. Over time I believe I developed this ability to some degree, but at the time it was a new concept to me.

I was fascinated to read in Parallel Play of how Tim Page came across a book on etiquette during his teens, and devoured it with great interest, memorizing as many of its rules as he could. He found this an invaluable resource in decoding the mysteries of social behavior, and it greatly helped his confidence in social situations thereafter. That reminded me of when I began reading a book on etiquette while on a temp job at a publishing company. I can’t say I memorized any rules, but I was struck by the revelation that the governing principle behind rules of etiquette was to make people comfortable—not, as I thought, to demonstrate one’s social status, or to outclass others with a show of politeness.

I lived with my mother till I was in my late thirties. One would think she would have been able to provide me with the supervision and counseling I needed to navigate my interactions with others. She did often make derogatory remarks about my social skills, but since this was usually presented as criticism rather than help, I didn’t pay much attention. One thing she said did sink in and begin to take root. It had to do with reciprocity—a concept I was very slow to grasp.

I had told her that a friend wanted me to go to a movie with her, but it wasn’t anything I was interested in, so I said no. She said, in a not-too-judgmental manner, that if I wouldn’t do things other people wanted me to do, maybe I shouldn’t expect them to want to do things with me either. That made some sense to me. It was as though a lightbulb went on, but I can’t say just when it began to influence my behavior.  

Decades later, though, I came to regret the time when my friend Ron wanted me to sit in his apartment to wait for a delivery, because he was working and I wasn’t. And even worse, when he wanted me to go with him to his sister’s wedding, because—as I later realized—he hadn’t come out to his family as gay, and wanted to appear straight. Both times I refused. I just didn’t see why he should expect me to do anything I didn’t want to do. I had no idea of what friendship was all about—that it involves mutual support, and that you do things for your friends because they’re your friends.

In fact, I had a lot of trouble grasping that people often do things they don’t want to do, just out of unselfishness. I assumed that if someone did something nice for me, it was because they wanted to. So I never understood why you had to thank people for things. I thought of it as a meaningless ritual, and tried to do it when I remembered, but it always felt awkward. This bothers me when I think of some of the people who went out of their way to support me, and I just took it for granted.

My semi-absent father did take pains to correct my social awareness and behavior when a deficiency came to his attention—sometimes harshly, sometimes not. I remember an incident when I was about ten, and apparently was puzzling over why the organist of our church didn’t always want to stay and teach me about the organ after the service. My father responded by reminding me that other people had lives of their own—they didn’t just hang themselves up in the closet when I wasn’t around. I thought, Well, I know that—what does he think I am, anyway? But the fact was, I really didn’t know it—not in any meaningful way. I really had difficulty imagining other people having lives independently of me.

Over the years I did develop an awareness of other people that included the realization that my needs weren’t central to their lives. I came to understand that other people had problems too, that they sometimes felt insecure or uncomfortable, and that they might actually be affected by things I did or didn’t do. But to this day I sometimes have to remind myself that someone I’ve called or emailed with a request has other things to attend to, and that responding to me isn’t necessarily at the top of their list.

Does all this sound autistic? Well, maybe I wouldn’t have met the diagnosis, and I’d hate to be labeled with a disorder anyway. But clearly I was in need of help. Over the years there were people who offered me insights about my interactions with others, and often I was grateful for these. No doubt my own prayers and those of Christian Science practitioners I consulted had a beneficial effect on my perceptions and actions. And much awareness is gained through the process of life itself. Even Temple Grandin, the famous autistic scientist, said that you become less autistic over time. I just have to wonder how different my life might have been if I had received professional coaching, such as youngsters with similar difficulties can receive today—or even more effective parenting.

While my mother’s complaints generally went unheeded, I had great respect for my father and generally listened to him, if reluctantly. I have no doubt that if he had remained in my life he would have given me much valuable instruction in how to manage social interaction. It wasn’t his strength either, but growing up in a large extended family he had been forced to learn the basics, and he understood the importance of these skills.

In the end, I believe it comes down to motivation. As my character improved and I began to think less about myself and more about others, the learning process got into high gear. So now, I must express my regrets by saying, “Sorry, everyone!”