Growing Up on the Spectrum

by Lynn Kern Koegel

  Study Skills

  Again, most of the work you do in college takes place outside the classroom without a teacher hovering and making certain you’re getting it done. It’s easy to lose your bearings in this kind of situation.

  We recommend that all of our students do some review right after class. This can be done by simply taking time to read through the material, rewrite and organize the notes they’ve taken, discuss the lecture with classmates, and maybe even memorize some of the information they have just learned. Too many students, both typical and disabled, try to cram, and that just isn’t the best strategy in college. It’s important to stay on top of things. Remember how you taught your child to give herself a certain amount of time to complete the work back in middle school? That will come in handy now because she has no one to check in to make sure she’s getting it all done. Remind her, whenever you have an opportunity, to budget her time, find study groups, get tutoring, go to office hours, and take advantage of any other academic support the college offers before she gets into trouble.

  Tailoring the Course Load

  Our students have different levels of needs. Some need a lot of help studying and others don’t need any help at all. Some can take on a full course load but others need to go more slowly because it takes them longer to complete assignments than most typical learners. Your child may need to experiment to settle on the right number of units for him to take each quarter or semester. Most universities will allow as much extra time as is necessary for a disabled student to complete college, so even if it takes an extra year or two, that’s fine—he’ll still get a college degree. Years ago I saw a T-shirt in our college bookstore that read “College—the bestfive years of my life!” Well, now it isn’t a joke. Many students take five years to complete college—our daughter who’s in med school did, and her accomplishments in that extra year provided an excellent background for her career choice.

  The good news is that the percentage of disabled students who graduate is about the same as the number of students without disabilities—but getting the right services and accommodations is essential.

  Classroom Strategies

  These days, most professors post their PowerPoint presentations on the Internet, which is great. They can be printed—and reviewed— after class, which removes a lot of the burden of taking good notes during the lecture.

  But even if the professor doesn’t do that, there are other solutions for the student who has trouble taking notes. She can sign up in the disabilities office and get a copy of another student’s notes. These days all colleges ( junior colleges and four-year colleges) have various programs for disabled students.

  We had one young man who would get so anxious about notetaking that he started hyperventilating in class when the professor went too fast. This attracted plenty of unwanted attention from the other students. To decrease his anxiety, we told him to simply stop taking notes when he felt overwhelmed and leave the page blank. Later, we got the class notes from the disabilities office, and he filled in any gaps. This created a partial-participation situation: he still learned how to take notes in a large lecture course, but with a lot less anxiety about missing information.

  Seating is also important. If a student gets distracted easily, it’s a good idea to have him always get to class early and sit toward the front of the class.

  Electronic Devices

  Many courses now have electronic devices that students use in class so that the instructors can be sure that they’re participating and learning the information. The students’ answers on these devices are often included as part of the overall grade. The electronic devices are purchased at the bookstore and are programmed with the students’ school identification numbers. The devices help the instructor monitor the progress of the class. If she asks a question about material that was just presented, and only half the class answers correctly, she knows that she needs to cover that material in more detail.

  Electronic devices are a mixed blessing for kids on the spectrum. For some of our students they’re fantastic. They eliminate the need to raise a hand and be called on publicly, which can be excruciatingly painful for kids on the spectrum. On the downside, some of our students can’t process verbal information very quickly and just aren’t ready to respond when the teacher asks the students to use the electronic devices. In such cases, we usually talk with the professor and arrange for some other type of testing procedure.

  Taking Tests

  As we discussed in the section on the SAT above, many students with disabilities have difficulties taking tests in a standardized way. Schools are usually quite sympathetic to this problem, and there are many options, ranging from taking the test in a quiet room to getting extra time. We have found that many faculty members are amazingly helpful with our students when approached directly. One anthropology professor even volunteered to give the test orally to a student, on his own time, when he learned that the student had trouble writing essays.

  These and other accommodations can be arranged ahead of time at the disabilities office, so the student can demonstrate what she has learned in the class without distractions that may put her at a disadvantage. The exact way that campus offices deal with students may differ somewhat, but most of the time the responsibility is on the student to follow through with getting assistance.

  Finally

  Remember, your role as the parent of a college student is to support and plan for success. Because your child is on the spectrum, you can’t just send him off without a second thought: you need to prepare him for the upcoming changes, help him develop an academic study plan he can follow with minimal supervision, and make sure there’s a support system in place that can swing into action if problems arise. At the same time, remember that the goal here is independence. The more your child can manage by himself, the more he’ll be ready to live a fulfilling adult life when he leaves college. Don’t hover or interfere if you don’t need to—and if you’ve done all that advance preparation, you very well may not need to.

  Social Life at College

  Socializing is the area where we have to intervene the most with our college students. It’s absolutely crucial to their collegiate success that they are able to make and keep friends. But when kids go to college, their whole social network changes. They no longer have the constant support of a family who’s there from the time they get up in the morning to the time they go to bed at night. Back at home, if they were lonely or hurt, their parents were there to comfort them. And most of them had a group of friends they could hang out with. College changes everything. But the good news is that all the kids are going through a period of adjustment, and everyone’s looking for new friends.

  Here are some of the life changes and choices your child will face when she gets to college, and some strategies you can use to help her navigate this socially challenging time.

  Living Arrangements

  Some students opt to live at home the first year or two of college. Others prefer to live in an apartment with at least one support person living in. In these situations, usually the parents or a state agency will help pay the costs of room and board for the support person, who can even be another college student.

  Other students live in the dorms the first year or two of college, although the dorm option is available for all four years if your child is finding that setting a successful place to live.

  If your child applies to live in the dorm, the school will send him a questionnaire so that he can be matched with compatible roommates. He will be asked questions ranging from what time he likes to go to bed to how much quiet he likes, from how he feels about alcohol to whether he’s messy or neat, and so on. Then the school will try to match him with other students based on his profile.

  If you look at the satisfaction surveys, most students find that larger setups with more roommates—say, three on each side with a bathroom in the middle—are the most successful, probably because it gives them more opportunity to mix and match. But yo
ur child may prefer a single. This is something you’ll have to give a lot of thought to.

  If your child is rooming with others and has social difficulties, you’ll have to prepare her (and yourself) for the possibility that her roommate(s) may request a change. At most schools, any child can request a change of roommates within the first few weeks without any questions asked. After that initial period, it’s much more difficult to change.

  Many colleges now have floors that are devoted to specific qualities that may appeal more or less to your child. For example, there’s often a substance-free floor, a rainbow floor (for gays and lesbians), a male-identity-issues floor, an environmental floor, a multicultural floor, a wellness floor, and so on. If your school has a special-interest floor that fits in with your child’s concerns, it may provide him with a similar peer group.

  If possible, you should talk with the staff at the dorms. Most are trained to offer support for any challenges the students might face and can lend a hand in helping your child get involved in social activities—or simply do a little extra checking up on your child on your behalf. Some college programs even have mentors, usually older students, who can also provide some extra social and emotional support to your child.

  A lot of college social life revolves around just hanging out. This may be difficult for your child. Finding out what’s going on, getting invited or inviting friends out, and having success on outings are often challenging to kids on the spectrum.

  CLAIRE

  When I think back to my college years, the first thing that comes to mind is how I could sit at the dining hall tables for hours just talking to friends. I don’t even know what we talked about—classes, I guess, and professors and philosophies and hometowns and crushes and so on. Same thing in my dorm room: my roommates and I could start talking at nine at night and not finish our conversation until one or two a.m. In many ways, it was the best part of the college experience.

  Unfortunately, that’s kind of a scary thing to realize when you have a kid on the spectrum who finds making social conversation unremittingly difficult. In high school, Andrew’s definitely able to shoot the breeze with his pals for the forty minutes or so of lunchtime—but in college, where conversation stretches on for hours and encompasses everything from politics to religion to the best ice cream in the city, will he be able to keep up? Will he find it so enervating he’ll crawl to his room in a state of exhausted anxiety? Will he grow more and more silent and just sit there feeling left out because he can’t keep up verbally?

  Maybe times have changed, but when I went to college, you hardly ever went to the movies or planned some other specific activity with friends—you just congregated and chatted. And it was glorious. But the one thing I’ve learned as Andrew’s mother is that he does his best socializing while participating in specific activities. But how do you find those kinds of activities in a college setting? And how do I help him survive—and maybe even enjoy—all the endless hanging out and chatting?

  DR. KOEGEL

  Setting Up Social Success

  The first thing we usually recommend is to help your child with his social conversation skills (see Section II, Chapter 2). Sometimes one little thing he does, like fidgeting or not looking another person in the eye or correcting someone on a minor point, may be putting people off right from the start. The last thing we want to do is to have one of our students make the effort to invite someone to hang out, only to be turned down or have it be a disaster! So we try to eliminate these potential pitfalls ahead of time to ensure our students’ success.

  As we’ve discussed earlier, if your child can find a club or class that speaks to her area of interest, she can find an instantaneous peer group. Study groups are great too—the structured activity of studying gives the student on the spectrum something concrete to focus on while still being social.

  The bulleted paragraphs that follow list the things college students on the spectrum must learn to do if they want to have friends and dates. It’s your responsibility to make sure your child knows what to do to help himself once he’s alone at school. The following advice is helpful for high school students as well, so you might as well start working with your child on all these things before he goes off to college, and then all you’ll have to do is remind and encourage him once you’re not available to do more.

  • Work on changing behaviors. Most individuals on the spectrum are motivated to improve, but we have had a small percentage of students who really resist any kind of change. It’s hard to help someone who doesn’t want help. Your child needs to understand that relationships require constant adjustment and flexibility and that following the advice of professionals and peers who have his best interests at heart will really make a difference in his life.

  • Check in. It’s painful sometimes, but it is necessary for your child to learn to check with her friends to see if she has any habits that might need to be changed. Simple questions like “Are you sleeping okay at night? I know I stay up late,” or “I have a hard time throwing out old newspapers; are there getting to be too many for you?” can go a long way toward improving social relationships. Of course, if the answer is “It’s a problem,” your child needs to make an effort to change any behavior that’s objectionable. Married folks have to do this all the time and that’s why their relationships work. You can help from a distance by encouraging your child to ask questions about habits you suspect might be irritating to others.

  • Initiate. The best way to make friends is to get out there. Encourage your child to introduce himself and ask questions, to join clubs and study groups, to smile at strangers and just keep putting himself out there. And remember, Internet friendships don’t count as friends. Your child needs to be able to make friends in real life.

  • Look for clubs. College is all about clubs, groups, teams, and organizations. Someone out there is offering something your child is bound to like. Look for sign ups and opportunities when you’re first bringing your child to school, and remind her to keep her eye open for the right fit once you’re gone and she’s on her own.

  • Be considerate. Tell your child to think about the people he’s met and liked and to try to do things that will make them happy. He can buy a friend coffee or hot chocolate on his birthday. If his roommate doesn’t like messes, he can clean up the place. He could help a friend study. If he’s aware he has habits that aren’t socially appropriate, he should try to find alternative behaviors. Being considerate will help him make and maintain friendships and relationships throughout his life.

  • Take advantage of strengths. If your child is good at a subject, encourage her to try tutoring someone who isn’t, or if she has a talent, volunteering her skills. We have a student who is great at computers and always fixes them for other students, which makes him especially valued when computers are getting extra use during midterms and finals, when they tend to crash. A good artist can help make invitations for a friend’s birthday. You get the idea. Your child should learn to help out in situations where her strengths will be valued.

  • Ask for help. Many college campuses are equipped with services to help not only in academic situations, but also in social and emotional circumstances. If your child is having problems making friends, he can get professional help from counseling services to learn why he isn’t making friends and how to fix the problem. Again, your role is to be aware and to encourage action on your child’s part.

  Dating in College

  Dating is something that is often neglected with kids on the spectrum. They may not have dated much, if at all, in middle and high school, so many are starting from scratch. Fortunately, college is the perfect environment in which to start dating. There are many members of the opposite sex who are all also looking for partners.

  We usually like to start with some practice dates and support. Again, at this point, because you are no longer with your child on a regular basis, you or she will need to arrange for this through one of the campus clinics. Once our students h
ave learned how to engage in good social conversation, we work on getting them interacting with other students their age. First we have them go places with someone their age who works at our center and who can introduce them to other peers. They’ve gone to movies, malls, sports events, parties, bowling alleys, restaurants, and a whole bunch of other places with a support person.

  For more specific information on dating and nurturing romantic relationships, please see Section III, Chapter 2.

  Jake’s College Experience

  Jake’s parents brought him to the Center last summer. He’s a brilliant student with Asperger’s syndrome who got a perfect—yes perfect—score on the SAT. He was accepted at a top-tier school, but once there, he had no support. He didn’t make friends and was soon miserable, and he eventually made his way to UCSB. We started working with him on social conversation, using video modeling, and after only four sessions, Jake was able to carry on a perfect and interesting conversation. Since then he’s found a group of friends who greatly enjoy his fantastic sense of humor, sweet personality, and intelligence. With just a little support, Jake has become a wildly popular student.

  One of the reasons Jake’s program has been so successful is his willingness to accept feedback and change accordingly. Because of this, his intelligence, and great personality, I know he will make the most wonderful husband for some lucky woman, who probably won’t ever know that he has been diagnosed with Asperger’s syndrome unless he tells her.

  JAKE

  Meeting new people has always been difficult for me. For most of my life, I have actively avoided conversing with people I do not know. The anxiety I felt whenever I considered chatting with a stranger was absolutely crippling. Should such a conversation take place, the awkwardness that typically ensued only served to reinforce my fears.