Growing Up on the Spectrum

by Lynn Kern Koegel

  Although one might expect this issue to lead to a childhood of isolation, such was not the case for me. I went to Poly, a small school that ran from prekindergarten through high school. I started there in third grade and had little trouble making friends. My theory is that the small size of the class forced me to get to know the other kids despite my initial reticence. Likewise, the prospect of a new friend in such a close-knit environment probably inspired the other kids to persevere past any oddness on my part. I quickly developed a small group of friends that I was very comfortable with.

  Middle school added another twenty-five kids to the class, bringing the total to approximately seventy. While it was somewhat disconcerting to have so many new people walking around, the fact that I had my own group of friends made it much easier. The new kids felt obligated to come to us and integrate themselves into our established social groups. Thus, there was little pressure on me. Because a few of the new students hung out with my group more and more, I eventually attained a level of ease that allowed me to feel comfortable interacting with them. Soon enough, the new students were fully integrated into our little clique. Indeed, two of the new students would eventually become my best friends.

  High school brought a few more students to our class, bringing the total to eighty-five, but my circle of friends was effectively complete by eighth grade. Throughout the entirety of high school, the only new friends I made came when I joined a new swim team in my senior year. However, this was a very similar situation to when I came to Poly in the third grade. It was a small team and there were only two other guys my age. Thus, they were willing to overlook my awkwardness and we became friends.

  At this point, there were about ten guys whom I considered very close, which is a very healthy, acceptable number, in my opinion. Around these ten fellas, I was typically lively, gregarious, and funny. However, whenever we were hanging out with people from outside our posse, I would clam up and become almost an entirely different person as my issues and fears came to the surface. Although I didn’t realize it at the time, I think that I had analyzed each one of my friends and mentally broken down their personalities. I knew what they liked and didn’t like, what they found funny, and so on, to a degree of accuracy that can only come from knowing people for years. Whenever an “outsider” infiltrated our group, I didn’t know how he/she would react to me and would slip into my shell as a result. I didn’t make the connection at the time, but this was a terrible sign for my immediate future as a college student.

  As our first post-high school summer came to a close, we all prepared to go to college. I had chosen to attend Duke University, the only person in my graduating class to do so. When I look back now, it is remarkable how little anxiety I felt at that time. I was headed to the other side of the country to a place where I knew no one, and yet I felt strangely calm about the whole thing. When I met my roommate, he seemed like a good, friendly guy, a seemingly positive sign. For the first few days, everything seemed to be going swimmingly. However, it was not to last.

  As the first week passed, I noticed that friendships were forming around me, but I couldn’t bring myself to talk to anyone. Indeed, without my high school buddies around me, my fear of interacting with strangers became distressingly intense. When I missed my first chemistry lab because I couldn’t find the room, I was too terrified to seek out the professor or the teaching assistant. In fact, I was too anxious even to go to the second lab because the thought of explaining what had happened was petrifying. I couldn’t bring myself to chat with anyone in the dining hall, even though I understood intellectually that just about anyone would be open to making a new friend. I had no experience with the social dynamics in such an environment and felt completely incapable of finding my way.

  Depression, which has always been an issue for me, often overshadowing any of the problems caused by Asperger’s, hit me full force. I stopped going to class. I began spending most of my time in my room alone, leaving only for food. Talking to my roommate became my only real social interaction. To be honest, I don’t remember much about this period. It was such an unhappy time that I seem to have blocked it out of my mind. All I remember is that when my parents received word that I was failing all of my classes and came to bring me home, I couldn’t even muster up the will to tell my roommate what was going on. I moved my things out in the dead of night, a cryptic note on the dresser the only evidence that I had ever been there.

  Back home, I slipped further and further into the depths of despair. As all of my friends from high school had scattered hither and yon to attend college, my isolation continued unabated. I enrolled in a few courses at the local city college, putting little effort into any of them. However, since this was at a city college, even minimal effort was more than enough for me to pass with decent grades. On the occasions when I actually went to class, I would sit in the back, never speaking to anyone, leaving the moment the class was over. During this period, I even cut off communication with my friends from high school, further compounding the situation.

  Summer eventually came, allowing me to see all of my old friends again, which helped alleviate my depression to some extent. Hindsight being twenty-twenty, I probably should have focused more on the “friends = less severe depression” equality. All the therapists and medication in the world were not helping me, but having a few friends around instantly bumped up my mood several notches. Since I battled depression throughout high school, it’s fairly clear that having friends present is not a cure-all. However, I feel confident in saying that having a few buddies moderates my depression and helps to keep it from being debilitating. Nevertheless, at the time, my improvement was largely attributed to the medication and therapy taking effect.

  My parents and I made the decision to move to North Carolina as a family while I gave Duke a second shot. The thinking was that I would be able to succeed with a solid support structure around me. And for a time, this proved to be true. In fact, I made the dean’s list during the fall 2005 semester. Nevertheless, my social issues still loomed large. I still could not muster the courage to talk to anyone, leading to the same sort of isolation I had experienced during my first stint at Duke. While I love my parents very much, having them be the entire extent of my social interaction was not particularly satisfying. Friendless and alone once again, my mood slipped, my effort slipped, and my grades slipped. I kept it together enough to pass all my classes during spring semester, but my A’s and B’s had turned into B’s and C’s, so it was clear to all involved that something was not right.

  Come fall 2006, the wheels came flying off once again. I was again in the throes of a depressive episode likely triggered by my isolated state. A further problem was that I had signed up for two math courses that were effectively at the master’s level. In no way was I ready to take these courses, but there were no safeguards in place to prevent me from doing so. At the beginning of the semester, I managed to stay afloat, despite my inadequate mathematical background, by working relatively hard. However, once my depression intensified and my effort dipped, I quickly went into an unrecoverable tailspin. Once again, my parents got the call that I was on the brink of failing most of my classes, forcing me to withdraw.

  It was at this point that I sank into the deepest depths I have ever experienced. I had just failed at school for the second time, I had no friends within a thousand miles, and there seemed to be little hope that things would get better. Suicide seemed to be a fairly attractive option. It was then that I discovered the game World of Warcraft. Although WoW has a fairly negative reputation in some circles due to its addictiveness, I firmly believe that it helped me during this period. It served two primary functions. First of all, it allowed me to escape the negative, terrible thoughts that were constantly running through my mind. Playing WoW was the only thing that allowed me to shut my brain off. While I certainly wouldn’t say that I was happy while I was playing, losing myself in WoW at least allowed me to feel less sad, which was incredibly significant at the time.
Second, WoW provided a social outlet for me. Through text chat, and eventually voice chat, I was able to get to know my guild mates and have some social interaction outside of that with my parents. Although using voice chat was difficult for me, because the anxiety I feel when talking to a new person only increases when I can’t actually see the person, the fact that it was a necessity for some of the more complex encounters in the game gave me motivation to overcome my fear and insecurity. Looking back, I feel somewhat embarrassed by the fact that my life became devoted to a computer game for months, but at the time, it was really all I had.

  Eventually, my family and I decided to move back to California. My parents decided on Santa Barbara, and we moved there in the spring of 2007. The initial plan was for me to take some time off from school and work for a while. At this point, I was feeling pretty good, especially compared to where I had been four or five months earlier. I started doing martial arts at a local studio, which gave me an opportunity to both exercise and socialize. Although I still felt very uncomfortable meeting everyone at the studio, the fact that we were all there to do the same activity helped to smooth the road somewhat. I decided to forgo all therapy and medication, having come to the conclusion that they had been of little or no help up to this point. It was surprisingly difficult to find a job, but eventually I found an administrative position at a local company through a temp agency.

  After a few weeks doing mind-numbing data entry work, I realized that I really needed to go back to school and get my degree. My parents were somewhat less than enthused because college hadn’t worked out particularly well for me up to that point, but I was determined. I worked out a deal that they would allow me to go back to school if I paid my own tuition. So off I went to Santa Barbara City College (SBCC) for the fall 2007 semester.

  Once again, I completely failed on the social front. However, this time I was determined to make the academics work, irrespective of how I was feeling and whether or not I had any friends. Experiencing the job market without a college degree was a fairly sobering experience, one that provided me with all the motivation I needed. While taking courses, I decided to apply for winter 2008 transfer admission to UCSB. Despite my calamitous experiences at Duke, I had withdrawn from all of the classes I was failing, so my transcript didn’t actually look that bad. That fact, combined with excellent test scores, led to my being admitted.

  As I was finishing up my semester at SBCC and preparing to start at UCSB, my mother heard about the Koegel Center. More specifically, she heard that they were working on developing treatment and support mechanisms for college students with Asperger’s. I was actually somewhat reluctant because I felt that therapy had done little for me up to this point, but I decided to give it a shot. I must say, I’m quite glad I did. The work I have done at the Koegel Center has been extremely helpful, and I believe that I have made a great amount of progress in a relatively short period of time.

  I think that the focus on specific methods and techniques is what has made my time at the Koegel Center so beneficial. In the past, I would routinely have conversations with psychologists that followed this general outline:

  THERAPIST: Do you feel anxious in social situations?

  ME: Yes.

  THERAPIST: Why do you think that is?

  ME: Um, I’m not really sure. I’m hoping you can help me with that.

  THERAPIST: What about socializing makes you anxious?

  ME: I don’t know … I just feel uncomfortable and do my best to avoid such situations whenever possible.

  THERAPIST: Where do you think these anxious feelings come from?

  ME: …

  And so it would go …

  At the Koegel Center, instead of trying to probe my feelings about my issues, the focus has been “Here’s what you have been doing when you talk to someone you’ve just met; this is what you should be doing instead.” Simple tips from my clinician, Whitney, such as “If the person seems interested in the topic they’re talking about, try to come up with a follow-up question” have been more helpful than a hundred conversations about my feelings and insecurities. Each week, it was arranged that I would talk to someone I did not know, or barely knew, which ensured that I practiced talking to new people. Had I just been told to go out on my own and talk to random strangers to gain experience, I probably would never have gone past square one. Instead, I practiced my conversation skills week in and week out, whether I felt like it or not, which undoubtedly helped me progress as an interlocutor.

  Another extremely valuable aspect of the treatment was seeing each of my conversations on videotape. Although I never really got comfortable seeing myself on tape, it allowed me to gain numerous insights as to what worked and what didn’t. In fact, between trying to integrate the tips Whitney had given me and watching myself on film, I came to realize that social conversation can be broken down and analyzed much as an academic problem can be. That is, I began to think about how I should respond to various situations, to consider a person’s potential reaction if I were to respond in a certain way, and to ponder what I should say next given the current topic and flow of conversation. Basically, I started thinking several moves ahead, almost as if the conversation were a game of chess or Go. I’m not certain whether this approach is typical or not, but it has certainly helped me greatly in my quest to be a normal, engaging converser. I must say, it was a rather gratifying moment when my partner in one of my final videotaped conversations said, “I thought that I was going to be talking to someone with social issues,” and then chuckled when I lightheartedly suggested that I might in fact have more issues than she realized.

  I also think that having the same clinician the entire time has been very helpful. Talking with Whitney each week has allowed me to obtain a high level of comfort with her that has likely facilitated my progress. Indeed, things have progressed to the point where we’re friends beyond the confines of the clinic, which is something I couldn’t have imagined at the beginning.

  Now, having “graduated” from the staged, videotaped conversations, I am trying different activities in order to integrate myself into the campus community. Whitney helps me find potentially interesting activities and provides subtle reminders about what to say, what to do, and what not to do. Although I still feel anxious before talking to someone I don’t know, my anxiety is usually at a manageable level because I know that I’ve successfully negotiated similar situations before. Certainly there are still times when I lock up and become abnormally quiet, particularly if my mind is elsewhere and I am not actively focusing on the conversation at hand. However, these instances have become far less common than they once were. In short, while I will never be the proverbial social butterfly, I have gained the ability to interact in a relatively natural way with people I do not know. Though making new friends still is not easy for me, I have managed to make a few in the past couple months, a vast improvement over my experiences at Duke, Pasadena City College, and SBCC.

  The next leap I am looking to make is into the final frontier, otherwise known as the world of dating. As I’ve joked to Whitney, “If you thought that I needed a lot of help with basic conversation, you haven’t seen anything yet.” Having never been on a second date, a romantic relationship is truly the great unknown for me. That said, as I write this, I have recently returned from a walk on the beach with a girl I chatted up in a bookstore, a sequence of events that would have been absolutely unfathomable six months ago. Things went well enough that my consecutive first date streak may be broken soon enough. I’m sure that there will be a number of tragically hilarious missteps on my part along the road to a meaningful amorous relationship, but the mere fact that I am putting myself out there and committing those missteps is a victory in and of itself.

  In conclusion, the skills I have gained at the Koegel Center have been of immense value. Is it possible that I would have succeeded at Duke if such a program of treatment had been in place? I’m not really sure. In hindsight, there is a good chance that I was simply
not ready to attend an elite university at the age of eighteen, irrespective of the support I had around me. However, now that I am focused and determined to succeed as a college student, the work I have done at the Koegel Center has served as the final piece of the puzzle in many ways. The social skills I have gained are helping me get closer to the elusive goal of being a “normal” twenty-one-year-old. My hope is that one day I’ll look back and laugh at the times when I couldn’t carry a conversation with a bucket. Although that day is still a ways off, it seems much, much closer than it once did.

  DR. KOEGEL

  Paul’s College Experience

  I met Paul when he was in elementary school in a special education classroom. We gradually moved him into full inclusion, arranging support for him so he could succeed in the regular education classrooms. We also started some lunch groups so that he would have friends to socialize with during his free times.

  Paul maintained good grades in all of his high school classes and applied to UCSB. He was accepted and is just completing his first year. We have focused primarily on academics during his first year and we will target social areas starting in the summer. This is his story (so far!).

  PAUL

  When I went to high school I knew I wanted to go to college. I applied to just one four-year college, the University of California, Santa Barbara (UCSB), that was close to my house (about an hour away), and I knew they had an autism clinic that could help me. I worked with people from the UCSB clinic in the past, and they encouraged me to apply. If I didn’t get in to UCSB, I decided I would go to a junior college for a year, then transfer over. When I first visited UCSB it was overwhelming because the campus seemed so big with big classes and that made me feel a little nervous.