The Road to (Self-) Diagnosis

Growing up in a small, homogeneous town in Pennsylvania, it was excruciatingly clear that I was different. I knew long before I started experiencing chronic teasing in second grade (which continued through ninth grade), long before other kids nicknamed me "Space Cadet" and "Alien." I knew it long before I began to sense that my parents thought there was something wrong with me, long before teachers and parents began calling my parents with "concerns." 


By fifth grade, I knew that I had ideas, perceptions, an imagination, and a sense of humor that often significantly deviated from what much of society expected. I also got inordinately obsessed with certain movies and television shows and I knew it was weird to do so. Like many people, I, too, thought that there was something wrong with me. I struggled to figure out why I was so different. But it was the early 1990s and I had never heard of the concept of someone's brain being hardwired differently, or even mental illness. In the '80s and '90s-- when I was growing up-- few people had. 


My parents first brought me to a psychologist in the middle of my fifth grade year. Dr. Klein (not his real name) told my parents and me what amounted to, "I don't know what to tell you. I've never seen anything like this before." I stopped seeing him after three years because it was clear that he wasn't helping and, although I liked him as a person, was notorious for analyzing things that had no deep meaning. 


The summer of 1998-- three years after I had last seen Dr. Klein-- was a major turning point in my life. The concept of people's brains being literally wired differently began to dawn on me, and it drastically influenced the way I understood myself as well as other people. I strongly suspected that my childhood and early adolescent obsessions with movies and television shows -- not to mention the obsessive crushes I found myself beginning to get as of late-- indicated Obsessive Compulsive Disorder (OCD). 


Unfortunately, despite my epiphany about OCD, I struggled with emotional frustration and meltdowns as well as major setbacks in social interactions. My summer camp-- the only place I had ever felt like I truly could be myself-- was not going to hire me as a first-year counselor in the summer of '99. With no friends at school-- I just couldn't connect with anybody-- I had no one to turn to, no backup plan.


In the fall of 1998, for the first time in three years, I was back in a therapist's office. Dr. Fried (again, a pseudonym), was a much, much better therapist than Dr. Klein. After the first or second session, he spotted a common denominator in my personality. "You're a very intense person," he said. Indeed, I am! I experience life in general intensely: favorite movies, friendships, crushes, and worrying. Based primarily on the obsessive worrying, he agreed with my theory that I had OCD and diagnosed me with the condition.  I only saw Dr. Fried for about six months-- college was just around the corner and I would be moving to Brooklyn, NY-- but he helped immensely. I moved to Brooklyn in an optimistic state of mind. 


In my junior year of college, however, my problems began to resurface. I continued to have social problems, not so much with other students (I made some good friends), but with teachers. I was in art school and many of the teachers fit the stereotype of the temperamental, self-righteous, imbalanced, and just plain nasty artists. Despite the OCD label, which was initially empowering, I began to suspect that OCD didn't paint an entire picture. I knew, somehow, that it just wasn't quite it. There were so many things-- like my problems reading social cues-- that just didn't add up.


In 2002, towards the end of my junior year of college-- and one of the worst years of my life-- I came across an article in Time about autism. As far as I knew, autistic people were "those people who don't talk." But then I saw a short description of Asperger's syndrome (AS) in a side bar. Obsessive interests. Difficulty interpreting nonverbal social cues. Awkward motor skills. I ran some searches on the Internet for AS and found out more. Obsessive, obsessive, obsessive. Difficulty making and keeping friends. Experiences the world differently. Misinterprets situations. And so forth.


The pieces fell abruptly into place.


Over the next year, I bought a number of books on AS and essentially diagnosed myself; a psychiatrist confirmed my diagnosis in the spring of 2003. After years of poking around in the dark and only finding partial answers, a complete, coherent picture was finally formed. AS was added to the DSM in 1994, but the vast majority of professionals weren't aware of it until a little after the turn of the century. 


At long last, I had an answer. How did I feel then? How do I feel now? As I said, 2002 was one of the worst years of my life. 2003 was the absolute worst. Whereas the discovery would have come as a relief in high school, a time when I was more optimistic despite my insecurities, I felt embittered and frightened. How could I possibly hold a job after graduating if I had this problem? Would I have to live in a group home or on SSI? Looking at my turbulent childhood and what looked like was going to be a difficult adulthood, I felt that nature had played a sick joke on me. 


Things have changed since then, and I'm a happy, well-adjusted adult, am relieved to have the AS label, and I am able to interact socially as well as the next person. Most people are amazed when I tell them I have AS. And yes, I do have a job. I suppose part of me feels cheated because I suffered for much of my childhood and my early adulthood, just by the sheer accident of being born in 1980 instead of 1990. But I know I should look on the bright side-- at least I wasn't born in 1950. People didn't go to therapy in those days; many people thought it meant you were crazy and should be locked in a padded cell. Sometimes I wonder if that would have been my fate, with the emotional meltdowns that I had from experiencing a world that made little sense to me.


And while we're on that note, it's important for society to understand something important about AS-- it isn't a mental illness and there isn't necessarily anything psychologically wrong with the person who has it; his or her neurology is just different. What Aspies need is not to be cured anymore than a gay person needs to be turned straight. After all, if we cured AS, we would have no Albert Einsteins or Temple Grandins. Aspies-- like gays-- need understanding and support and to have their strengths nurtured, not their weaknesses emphasized. I feel privileged to at last be entering an era where this attitude is starting to become more prevalent.