Monday, December 6, 2010

What it means to have Asperger's Syndrome

What do Wolfgang Amadeus Mozart, Albert Einstein, Thomas Jefferson, Isaac Newton, and Charles Darwin all have in common? Aside from the fact that all of them have made major contributions to their respective fields, each one of them has been speculated to have had Asperger's Syndrome, which, for those of you who are not aware, is a high functioning form of autism that is distinguished from other types by a lack of impairment in cognitive development and, at times, above-average intelligence. I have not accomplished nearly as much to date as any of those historical figures did in their lifetimes, but I, too, have Asperger's Syndrome.

You might think I am incredibly well-adjusted for somebody with an autism spectrum disorder. But this was not always the case, as anyone who met me before 2010 will confirm. It took me a long time and an immense amount of effort to get to where I am now, but I have learned a lot along the way and one of my goals in life is to use what I've learned to help the world understand why autistic people act the way they do. The short answer is that their brains are wired differently, but there is a lot more to it than that.

I would guess that most, if not all of you, when interacting with others face-to-face, communicate not only through spoken word, but also through subtle nonverbal cues such as posture, tone of voice, facial expression, and various other types of body language, all of which influence how what one says is perceived by others. And I don't think it would be entirely unfair to assume that most of you learned to communicate this way without really giving it any thought, and tend take it for granted because it is so second-nature to you.

The reason I point this out is that until last semester, I was almost completely oblivious to the fact that nonverbal communication even existed, and only even more recently did I realize how essential it is to most people's interactions with others. Sure, I knew the rather obvious kinds, such as if someone is yelling in an obnoxious manner, that implies he is angry about something, or the basic types of facial expressions that we are all taught as a child. But as hard as this might be to believe, my mind just did not pick up on the deeper ones such as the direction someone faces while talking to you, or the level of excitement in his voice as an indicator of how interested he is in the conversation. (Likewise, I once found it hard to believe that most people can't tell the difference between a C and a C# without reference. It seems to be the case that I perceive music similarly to how most people perceive social interaction.)

So I went about the vast majority of my life so far unaware of the fact that much of what people were trying to communicate to me was not registering. Because of this, I had no way of knowing that the nonverbal cues I gave off, even though I was not giving them any conscious thought, were not only being perceived and interpreted by those who witnessed them, but also played a significant role in determining their initial impression of me. For example, if I did not look somebody in the eye while he was talking to me, and he was unaware of my condition, he would've probably concluded that I was not paying attention to him, even though a more likely explanation would be that it did not occur to me that I was supposed to. Eye contact was not something that came naturally to me, and I had to actually train myself to look directly at people while in conversation with them before I could do it automatically. It was also common for people to give me nonverbal cues which I would not be able to decipher, and pass negative judgment on me based on my lack of response.

The discontinuity between my communication and that of others inevitably led to many skewed perceptions both on the part of myself and others. For example, a girl who took a music class with me during my sophomore year recently told me that at the time, she noticed that I kept almost entirely to myself, and only spoke up when I wanted to "show off" my perfect pitch. She didn't give much thought to it and assumed that I acted this way because I thought I was better than everyone else. In fact, the reason I kept to myself was actually that I felt inferior to everyone else, and I believed like I had to make my talent blatantly obvious because as far as I could tell it was the only way I could get anyone to notice me.

Why did I have such a limited sense of self-worth? As absurd as this may seem, it was simply because I thought the mere fact that I was me caused others to universally perceive me in an unfavorable light. In hindsight, it was absurd. But there was a reason I felt this way, and it had a lot to do with what I didn't know, and the fact that I didn't know that I didn't know it.

In high school, pretty much everyone was aware of who I was, due to my being a highly gifted (to them) musician. But I was also notorious for the outward signs that made it obvious that something was "off" about me. And even those who claimed that my musicianship defined me more than my eccentricity never seemed to really want to hang out with me. At the time I attributed this almost entirely to the stigma of my having had required a student aide to follow me around everywhere until ninth grade, as well as my history of unpredictably losing my temper in the middle of class. When my social life continued to remain the essentially same throughout my senior year of high school, I concluded that I would always be "that guy" in the eyes of the high school class, and nothing could ever change that.

Looking back, the underlying cause of this must have been my lack of knowledge about social dynamics. In particular I had a long-standing belief that if someone wanted to be my friend, he would approach me about it, and I would not have to take the initiative. It did not occur to me that "wanting to be my friend" was different than "being open to the idea of being my friend," so I did not take into account the fact that one would have to willingly leave his comfort zone to reach someone not connected to anyone in his circle of friends. As far as I knew at the time, the fact that nobody really made an effort to connect with me meant I wasn't worth it to them. But at least I had college to look forward to, where nobody knew about that stigma, and where I would be able to truly shine. Or so I thought.

What actually happened when I first arrived at Penn was that I noticed a pattern in the way people seemed to act towards me. Regardless of how well we initially got along, it seemed that every person I tried to connect to would eventually end up consistently giving me the cold shoulder. It seemed that whenever I went, others made me feel like an intruder, and so I learned to expect to be made to feel this way automatically. And you all should know how acute an autistic person's emotions can be. If not kept in check they can obstruct all rational thought. Unbeknownst to me, my discomfort was obvious to others, some of who thought it meant I didn't like them and reacted to me based on this. And the spiral continued downward. I was in the exact same boat as in high school except without the benefit of everyone knowing who I am. Maybe, I eventually thought, it wasn't just the stigma of my past as a special needs child that had been isolating me. Maybe I am just inherently inferior to others.

Of course, this was not true. Again, it was due to my lack of awareness of social dynamics, and also due to my emotions interfering with my better judgment. I don't think I have to explain what it was that made people react to me the way they did, as it is probably obvious to all of you. But it is important to mention that this highlights a remarkable common denominator of myself and some of the people I interacted with: just as I was oblivious to their ways, they were oblivious to mine. Many of them had never met a person on the autistic spectrum before; some didn't even know it existed. Since they had never encountered anything like it before, they did not know how to react to it, and more often than not they were inclined to push it out of the way and get on with their lives without really giving it any thought.

Awareness of autism among the general public is increasing these days, but it has yet to truly filter into the consciousness of many. In April I attended a fundraiser for autism research.  After it was over, I talked to the people running the event and eventually found myself lost for words while trying to explain my struggles. One of them later told me that she "lived in a bubble" and didn't realize how real the issue was until she saw me stammering while looking for the words to describe how I felt.

But not everyone lives in a bubble. Last year I was invited to play keyboards for a band consisting of several of my former high school classmates. The drummer, who contacted me about it, was one of the popular kids, so I was quite a bit surprised at the offer. But he had since gone on to study psychology at college, and one of the things he learned about was Asperger's Syndrome. All of a sudden he understood that the reason I was such a gifted musician was the same as the reason I was "that guy!" So he decided to give me a shot. And the transition was not exactly the smoothest as far as communication went. But neither he nor any of the other band members held it against me when I did something socially unacceptable. Instead, they would point out my error, and in a non-critical matter, explain how I could do better next time. Over time, I became much easier for them to work with.

I feel that my relationship with my band is a good example of how one might effectively communicate with an autistic person. They took the time to work with me and understand my ways, just as I took the time to work with them and understand and adapt to their ways. It was entirely due to people being willing to level with me that way that I was able to become as well-adjusted as I am today. I still have work to do; even today, I still might say something rude without realizing it's rude, or unintentionally break some norm I'm not aware of. But if people simply point out my mistake rather than holding it against me, then I can learn to avoid it next time.

Granted not all autistic people are as high functioning as I am. It takes more effort to reach one who is not, and it may be next to impossible for some to reach anyone. But my point still stands. The fact that one person might be on an entirely different wavelength than another does not preclude the possibility of them communicating effectively if they take the time to understand each other's ways as much as they can. If more of us were to realize this, it could lead to a society in which we are more mindful not only of how we treat people with challenges such as autism, but also of how we treat each other in general.


  1. Thank you for sharing so openly. This blog belongs in the NYT, front page.

  2. I am so impressed with this article. You are an amazing human being and despite your communication challenges, I believe you have the persistence, intelligence, and heart to truly be successful in life. Good for you!

  3. Mike: This was so illuminating that I want to share it with everyone I know. May I? Thank you for this post. I have signed up to follow your blog.

  4. Incredibly insightful. Thank you for opening your heart and allowing others to understand this area of Autism.

    Having taught children in the past who were on the more severe spectrum of Autism I found your self awareness extremely unusual. Your ability to see yourself for who you are, to accept yourself as a valued human being and your willingness to work through the challanges that you face in your inability to always communicate effectively is invaluable. Most human beings who are not-- as you say -'on the autism spectrum" do not always communicate effectively either and certainly are not as introspective. Bravo!

    I hope to meet you and hear you play in the near future!

  5. Thanks for this. Have added a link on our Serendip website at