Thursday, February 17, 2011

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. 


  1. I feel like nature played a sick joke on me too.
    Being born in 1990, isn't all that great either.
    I went into jr high with a newly diagnosed label, after having a bad reputation from meltdowns. Teachers didn't and still don't understand it. So going through jr hi and hi school with double stigmas aren't worth being born later. I have a feeling that a lot of people were diagnosed in the first few years of the century.

  2. Hi Anonymous,

    Yeah, you're probably right. Since I discovered AS in '02, it probably would have been better for a 7-year-old that year instead of a 12-year-old. So yeah, I guess maybe if I were born in 1995 instead of 1980 it would have been better. But again, at least I wasn't born in 1950.

    How are things for you now? Are they getting better? Why not sign up as a follower on this blog; maybe some stuff will strike a chord with you and be helpful.

    Good luck,


  3. I know that this is an old post but I just came across it and I wanted to say that I can really relate to it. I am a 31 year old female and I was diagnosed with Asperger's about a year ago and it was a huge relief to finally know what was "wrong" with me. I also studied art in college (but I haven't been able to find a job since I graduated).

  4. I think a lot of Aspies can related. How are things for you now?

  5. I was born in 1984 and saw a psychologist in I believe 1994/1995 (10-11 years old) for a short period of time. Months. Didn't trust the psychologist. Don't trust my parents. Don't trust society.

    They got very little out of me and even tried to get me to connect with another quirky kid. Good friends are hard to make. I have had probably one good friend that lasted any length of time. That was 3 years. That could have easily lasted much longer although he moved.

    All I can say is resist! I knew that then and in my own ways did so. Of course that only got me labelled more. I resisted in 2nd grade and learned something of value. Strong resistance is futile. Tepid resistance works better. Being labelled can have legal consequences.

    My life (the next 25 years) may literally be altered because of the decisions my parents took in 1995.

    I am also gay. I am not out. Not that I am not comfortable with myself. I am. It is society I am not comfortable with. And for good reasons.

    Homosexuality pre-Nazi 1930s was flourishing. Then look at what happened since. Disturbing repercussions. We are still not over it.

    Be aware. Labels and diagnosis have consequences and still do. Sometimes even more than being gay now. And the medical community is disturbingly wrong in many cases. All of which go back to having legal consequences for AS suffers.

    By the way the suffering part is entirely because of society and not because of an illness. You can argue AS doesn't exist and would not necessarily be wrong. It is like being gay. There is a spectrum and being different does not make you mentally ill.

  6. Wow... Do you live in a religious area where being gay is not accepted? Sorry about your shrink. They are some good ones but also some real boneheads.