Growing Up on the Spectrum

by Lynn Kern Koegel

  After I decided to go to college, I had to take the SAT. It was a big pain in the butt. I have a few choice words about the SAT because it was hard to study for it in addition to all my classes. I got extra time on the test, but I kind of wished I hadn’t because I had to go in to take the test on two days, including a Sunday, instead of one day like the rest of the students. I think I could have done it in one day. Someone also read the questions to me, but I felt like they were talking down to me and assuming that I wasn’t that smart. It felt like they were reading a script instead of reading the questions and answers that were printed on the test. I think I could have done just as well if I had read it myself.

  The application process was a little difficult because I didn’t know what to say about myself. I wrote essays on my strengths and weaknesses, and I wrote what it was like being on the spectrum for one of my essays.

  When I got accepted into college at first I was nervous. I wondered how I was going to navigate the mazes. I had the same nervous feelings when I transferred from elementary school to middle school, except on a larger scale. But then it was cool. It was pretty cool because I realized that everyone was going to be there to help me and it was pretty impressive to tell people that I was accepted into a good college.

  I decided to live at home the first year of college, which was sort of difficult to deal with because of the traffic, but it hasn’t been that difficult. I was planning on moving near campus the second quarter but that didn’t happen, partly because I like being at home. I am hoping to live on campus my second year, but I really don’t want to be away from all the stuff I like, like my bed, my TV, my models that decorate my room, and all that stuff that just feels familiar. I don’t think I could have taken all that stuff to my dorm room. Next year I am thinking about living in an apartment but I may stay at home because we have a housekeeper and stuff, and I’m not that good at cleaning and making my bed and that sort of leads to an element of discomfort.

  School is going well. I have had some professors that are really great, some are okay, and some I haven’t appreciated that much. Of the ones I like, one’s name was Dr. Mohamed Spocter, and he was always very nice to me. For the essay part of the final he came in and discussed the questions with me. He also came to my twenty-first birthday party. He talked with me a lot about other stuff besides school, like South Africa, where he is from. There were about three hundred students in his class but he still took out a lot of time to help me. Another professor, Dr. Peter Huk, was really accommodating and helped me learn college writing. Then I had a few who were not as understanding of a situation. Like in second quarter, one of my professors of economics tried to help in every way he could, like unlimited time during tests, but he wasn’t understanding at all. It was very hard to approach him after class. He gave short answers and was inflexible about everything. He had ways of doing things, and PowerPoints he followed exactly, and wasn’t willing to give any extra help on any of the lectures or assignments. It would have helped me if he had been friendlier, explained things better, had written more detailed notes, and stuff like that.

  In general, I have some accommodations on tests. I get extended time, a proctor who brings me the test and stays there while I take it, and I take my tests in a separate room. Doctor Spocter came to the separate room to give me my essays in person. That was really nice of him. I also get some other help. In class, I have a girl who works with me. She helps take notes and goes over the notes with me right after class. I also have Gus, who helps me go over notes on days that I am not on campus. He helps me study and helps me write my papers. I study about three to five hours each day besides the time that I’m in class. Gus helps me during most of the hours I study, but every night I review the class notes on my own. I think I am going to major in economics because I want to go into business.

  Socially, I have met one friend and there is this girl who knows me in my geology class, and I know one other girl that went to high school with me, and another girl, Brittany. Most of them came to my twenty-first birthday party, which was at a pizza parlor in the college town right by campus. I bought pizza, beer, and sodas for everyone. Most of my friends are girls. I guess I get along better with girls.

  The way I meet girls is that I usually try to pair up with teams in class and I always introduce myself to other kids in class. Usually I say, “Hi, I’m Paul. What’s your name?” I don’t do a lot with my friends from the university outside of school, but on the weekends I get together with my friends from high school, since it’s about an hour drive to my house.

  So far, I’ve gotten a B average. I got one C in a history class. But it’s going pretty well. I like the college experience. It’s sort of hard to meet other kids because they are always with their friends and doing their own thing and I am doing my own thing trying to stay on top of my work. In the next few years of college I’m hoping I can make more friends, do well, graduate, and have a successful life.

  DR. KOEGEL

  Jeff’s Roommate Experience

  As a freshman, Jeff was assigned a roommate with Asperger’s syndrome, Jimmy. Jimmy, while brilliant in the area of computer sciences, had no support system. His family didn’t visit him—not even once—he rarely left his room and had no social life whatsoever, aside from Jeff’s daily interactions with him. Well into his second quarter, Jeff noticed that Jimmy wasn’t leaving his room at all. After repeatedly asking him if he was missing class, and Jimmy repeatedly assuring him that he wasn’t, Jeff found out that his roommate hadn’t even registered for classes. Below, Jeff discusses his challenges and his thoughts as the college roommate of a student with Asperger’s syndrome.

  JEFFREY MORRIS

  My freshman-year UCLA roommate never really showered. California droughts and a liberal campus—I guess this made sense. Unfortunately, he never seemed to have a friend or family member around to give him feedback on his body odor. At the time, I knew little about AS and diagnosed Jimmy’s condition only after stumbling upon an Asperger’s self-help book when I was browsing through the bookstore one day. His quirks and social particularities gradually made sense, and I came to understand why Jimmy never left our shoebox of a room.

  A perfect SAT score and a knack for the trumpet had landed Jimmy at UCLA. His parents remained in northern California, in a city that was, as Jimmy casually proclaimed, 318 miles away. He marched in UCLA’s marching band—the Solid Gold Sound—and performed in-head calculations that surpassed my own abilities with a TI-89 calculator. He was, quite literally, a genius. A few days into my freshman year, Jimmy revealed that he was actually a sophomore.

  Sadly, via a monotone administrative letter, the school silenced Jimmy’s beloved trumpet. His freshman year academic record had failed to reflect the high school computer science heroics, and effective immediately, Jimmy’s band eligibility perished. He became a member of a new group: the Academic Probationers.

  Minus his Solid Gold Sound, Jimmy retreated into a virtual enclave known as World of Warcraft. The multiplayer online role-playing game hosts over ten million adventure seekers hoping to slay monsters and goblins. Although I invited him to come to events and go on outings with me, he always declined. The game serviced Jimmy’s social aspirations and, by taking up all his time, rendered unlikely any prospect of academic recovery. He ascended the virtual WoW rankings, seizing control of an online clan that practiced every day for twelve to eighteen hours. He often commanded the army for days without sleep—I had to admire his attention span and stamina, even if I wasn’t so crazy about his choice of activity.

  Jimmy’s reputation for strategic innovation and wartime practicality made him a legend within the virtual world. His real-life heroics became fables too: he once walked six miles to Best Buy for a computer microphone that became his conductor’s baton. Jimmy shouted “advance” and “retreat” to online ensembles with an efficacy that never synchronized with my sleeping habits. In fact, it seemed that Jimmy never slept. All night long he played and played. After time
, his virtual promiscuity frustrated me, and after much thought, I allied with the Internet cord beneath my bed. In the wee hours of the morning, when we both needed sleep, I began unplugging the broadband cord, killing our Internet connection and Jimmy’s ability to command. Jimmy never discovered my status as the secret operative responsible for the assassination of our broadband connection. During these new off-line hours, Jimmy and I began to talk more, which was refreshing—I was the only human he was having any contact with. At first, I talked, and Jimmy listened. Eventually, Jimmy did the talking, and his chosen topics exposed the interests of a typical UCLA student. Coed girls intrigued Jimmy, and quotations from Top Gun and The Big Lebowski were typically followed by “goddamns” to USC. Sometime around May, with classes winding down and finals approaching, I unplugged the Internet cord and shut my eyes, ready to get a good night’s sleep. To my surprise, Jimmy responded differently this time. He began pounding his microphone against the keyboard, his forearm moving like a carpenter with a defective hammer and a broken will. I had no idea what to do—Jimmy had never reacted this way. His desperation turned into a melancholy and a discernible loneliness. Even so, I didn’t revive our Internet connection; Jimmy needed to live in the real world, I thought.

  And then I heard something new—a box opening and a low pitch attempting to find higher tones. I opened my eyes to see Jimmy playing his trumpet. I listened intently for hours as the melodies grew optimistic with the night.

  The concert explained everything: Jimmy, like all of us, just needed a companion to follow and sometimes conduct—his just happened not to be another person.

  DR. KOEGEL

  In Summary

  College can be a great experience and it can also be a nightmare, whether or not your child is on the spectrum. But when your child is on the spectrum, he’s starting out at a disadvantage.

  As you’ve experienced throughout your child’s schooling, techniques and programs that help her academically are much further along, better researched, and more abundant than programs that can help her socially. It’s critical—not just a luxury but critical—that your child have a comprehensive program that addresses any needs she may have academically, behaviorally, and socially. Have this all in place before saying good-bye, so that you’re ready to address any potential problems well before they blow out of proportion. Make sure there’s support in place at the college before she starts her freshman year. Do everything you can to make the college experience a happy and positive experience for your child, her roommates, and her circle of friends.

  Frequently Asked Questions

  My daughter doesn’t want to have any roommates, but that’s not a possibility for freshman year at the school she’s going to. Given that, is she better off having one roommate (less noise, maybe less stress) or several (the burden wouldn’t always fall on her to interact)?

  Most larger schools have floors that group similar students (based on the forms they initially submit). For example, there’s usually a floor devoted to quiet. This floor is for the more studious student and may be a good match with your daughter’s desire not to have to socialize as much. The school will also try to match her with a compatible roommate by having her fill out a profile. In the profile, she can indicate that she likes to go to bed early, likes quiet, and maybe has other behaviors that are less likely to be associated with very social students. This should help her end up with roommates who aren’t likely to be loud and intrusive.

  There are pros and cons to the number of roommates. If she has one roommate, it will certainly be quieter than with two. However, if this one roommate isn’t compatible with your daughter, they will have to either switch immediately or be together the remainder of the year. In contrast, if she has two roommates, she may get along better with one, or the other two may get along well and socialize, leaving her more time to be alone in the room. Either way, it will be important to help her get intervention so that she learns social interaction skills that will help her throughout her college days and career.

  The university my son goes to has asked that parents refrain from contacting faculty members, and I understand that policy in general. But I think it would really help my child if his instructors knew a little bit about him. Do you think it’s okay for me to contact them?

  I would recommend first talking with the disabilities office and any specialized counseling clinic (or any specific program center for kids with autism or Asperger’s) that may exist on your campus. Having the professor learn about your child probably would be very helpful, but many busy faculty members find it difficult to deal with students’ parents. Additionally, if you interfere too much, you may change the relationship between the professor and your child. The best gift you may be able to give your child is to teach him to advocate for himself. Teach him to go to his professors during office hours and discuss his personal situation. Believe it or not, if there isn’t an imminent midterm or final, many professors don’t have any visitors at all during their office hours and have plenty of time to offer support.

  Being comfortable approaching the teacher on his own might have many other benefits for your child. I’ve discovered, from having college kids of my own, that a professor will sometimes change a grade if the student makes a real case for doing so. One of my daughters e-mailed an English professor that she thought her paper was A quality, but she had been given a B. The professor reread her paper and changed the grade without even meeting with her! Again, teaching your child to advocate for himself may be the best way to get the appropriate considerations, along with any accommodations provided by the disabilities office, of course.

  I’m not happy with the limited disabilities support at my daughter’s college. If she’s living in another state to go to school, is she eligible for any services there?

  Yes. You will want to check for local autism resources that may provide some support to her that supplements what she’ll be receiving through the college. Many states, such as California (which has Regional Centers), have specialized programs that can help with socialization, leisure activities, and any self-help areas your child may need. These services are nice because they can fill in any potential nonacademic gaps the college isn’t able to help with.

  What types of college programs are available to my child and how do I make sure my child accesses them?

  All colleges have disabilities programs and any enrolled student is eligible for the services. Some may have better programs than others and some may have a variety of programs in different departments. For example, many universities have a disabilities office that’s separate from their counseling and career services. Some may have a clinic in the psychology program and other services within departments. Study the options thoroughly before your child starts. Now, having said that, I need to emphasize that many students who are eligible don’t take advantage of the disabilities office. They may not pick up notes and may not show up to work with the staff. Because they’re adults, it’s their choice. The disabilities office may not get notification that they’re failing in school because that’s confidential information provided to the student. Often a parent doesn’t even know that his child isn’t going to class or is on academic probation or has flunked out (until he gets a refund on the tuition). But as I mentioned above, the percentage of kids with disabilities who flunk out is about the same as the percentage of typical kids who flunk out, so it may have more to do with motivation than the disability per se.

  SECTION V

  Beyond the College Years

  1. Introduction

  My son is only in high school but I spend a lot of time thinking about what the future holds for him. Right now he needs so much support that I can’t imagine that need will simply end when he graduates from high school or turns twenty-one. I can keep him at home with me, but I know I won’t live forever, so having him just as dependent on me when he’s forty as he is now hardly seems like a solution. But I’m not sure what the alternatives are.

  CLAIRE
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br />   The future looks pretty good to us these days, but it didn’t always. When Andrew’s first speech therapist let us know he had some serious “processing issues” and was probably on the spectrum (she was being careful because she didn’t feel qualified to diagnose), she tried to allay our fears by saying cheerfully, “You don’t know what the future holds. Why, I had a kid just like him whom I worked with for years and he went to college!”

  It wasn’t all that reassuring. It hadn’t occurred to us yet that Andrew’s speech problems meant he might not go to college. But from that point on we realized that nothing was a given with this child of ours, not college, not marriage, not children of his own, not a career—none of the things that we took for granted in our own lives would we ever be able to take for granted in his.

  The good news is that after years of interventions, we’re pretty hopeful about the future. We’ll never take anything for granted, but we’re not ruling anything out either. A current big topic of conversation in our family is which colleges Andrew should look at, even though he doesn’t have to apply for another year.

  We know we’re lucky. For many years, I wondered what would happen to our little boy when we died, and whether his siblings’ lives would be burdened by his needs. The stories I was hearing about adults with autism at that point weren’t consoling ones. I may not have to worry about those things anymore, but I think there’s been so much improvement in interventions, awareness, and information that everyone’s future—not just Andrew’s—is brighter than it might have been a decade ago.

  DR. KOEGEL

  With any child, you never know what the future holds. We all try to do the best we can with the one chance we have to raise our kids, but in an unfortunate circumstance or an unexpected instant, everything can change the lives and futures of our precious children. You don’t want to be crippled by fears of what might happen, but it’s important to remember that the future isn’t predetermined for anyone.