Growing Up on the Spectrum

by Lynn Kern Koegel

  In all honesty, I’m not sure the fever made that big a difference in the outcome anyway. He’s since taken the PSAT under normal low-pressure conditions (his high school has the students do it every year for practice) and … well, let’s just say that standardized tests don’t play to his strengths. They also don’t correspond at all to the grades he gets, which are consistently pretty strong because he’s such a hard and dedicated worker.

  With the PSAT and SAT looming ahead of us and no luck with either accommodations or no accommodations, what conclusion have we reached to help Andrew do the best he can?

  None whatsoever. Good thing Dr. Koegel is around to give us all advice.

  DR. KOEGEL

  The Diversity Category

  If your child still isn’t too great at all that verbal and writing stuff on the SAT (or even the math), don’t panic. There is still one other option. Many universities have a diversity category for students who have overcome extreme hardships in their lives or who have excellent skills in some areas but not all. This category is similar to the allowances that are made for outstanding athletes at a great number of universities. Many universities understand the extreme challenge your child has had to overcome just by having a severe disability. If scores for sections of the test are very high, or if your child has some very strong skill areas, admissions officers will often overlook a weaker section. And even if your child’s scores were little lower than the school averages on all the sections, many universities will still allow your child to participate, because most strive for a diverse population.

  But always encourage your child to keep his grades up. Colleges consider many sources of information about your child when deciding admissions, including the SAT, your child’s high school grade point average, and the effort put into the application. Encourage your child to do as well as she can in her areas of strength so the standardized tests can be put in perspective.

  Precollege Programs

  We are now seeing a number of precollege programs popping up around the country. These programs help prepare kids for college, teaching time management, socialization skills, study skills, vocational exploration, and even actual academics. They are not specifically designed for students on the spectrum, but they can give you an indication of areas that may be challenging, and it’s a great idea to get started in these areas prior to college.

  These days, many colleges offer programs where high schoolers can spend a few weeks in the summer taking courses in their area of interest, and as I mentioned above, practicing for the SAT. These types of programs are especially helpful when there is a program with staff who can support a child with autism or Asperger’s. Again, you’ll need to do your homework to make sure that the school has support staff who can help your child if he needs it.

  Choosing a College

  I would not recommend sending your child to a program that doesn’t provide some support for kids on the spectrum, so you’re going to need to do your homework and figure out ahead of time which schools can meet her unique academic and social needs. I have seen too many bright young individuals with Asperger’s or autism who have been miserable in college or even dropped out because they didn’t get the support they needed.

  Of course, this isn’t to say that every child needs the same amount of support. There are many students who know they have a diagnosis on the spectrum and still choose not to take advantage of any services. They do well in school, they date, and they don’t seem to have any problems surviving college. And there are those who wouldn’t make it past their first week without support. There’s a third group too—those who can survive without help but who (wisely) do seek out some support in social areas.

  Junior College Programs

  If you feel your child isn’t ready yet for a four-year college program, you can find a range of programs at junior colleges. Some are very specialized and designed just to give some help to special-needs students—their goal is to help the students gain basic job skills rather than an academic degree. Usually these aren’t really inclusive and will group all the students with disabilities together. These programs vary. Most are day programs, but some include living accommodations. The student on the spectrum may live with other disabled students. These programs often teach daily living skills so that the students can learn how to shop, cook, clean, do laundry, and take care of themselves in the future.

  Other junior college programs focus more on helping students complete an associate of arts degree or the necessary units to move on to a four-year college. Students enrolling in the degree programs are usually offered academic and sometimes financial assistance through a disabilities office or state fund.

  Four-Year College Programs

  Many universities, now realizing that individuals on the spectrum are often very gifted in specific areas, are more likely to accept them these days. You’ll have to decide whether your child is ready to go directly to a four-year college or whether transferring from a junior college would best meet his needs.

  I would suggest keeping several things in mind when trying to make that decision. First, can your child take care of himself independently? This includes getting up in the morning; maintaining a healthy level of hygiene and grooming (although, admittedly, I see a lot of college kids on campus who look as if they just rolled out of bed!); getting out the door on time; buying books, food, and supplies; and doing his own laundry, studying independently, socializing, and finding activities to stay engaged and busy.

  If she’s going to stay in her room all day, miss classes, and become even more socially isolated, you may want to consider having her attend a junior college close to your home for the first few years. There will be lower academic expectations and you can gradually teach her the skills she needs to succeed socially and personally. But always remember that it may not be in the best interest of your child to keep her too sheltered. Eventually, no matter how scary it is for parents, our children need to spread their wings and fly off on their own. They have to fail sometimes and succeed sometimes and on the way figure out what life is all about, all while learning to be self-sufficient. That’s the goal for everyone and it should be the goal for your child.

  Applications

  The actual application process is tedious and time-consuming and a pain for everyone. Your child’s high school college counselor should be able to help with the application, but you will undoubtedly have to edit the essays. Most parents do. In fact, I remember editing essays for my kids and all their friends. I knew how many essays the admission officers have to read and I knew that if the first line really drew them in, they might read the entire essay, so most of my editing involved turning those essays into compositions the readers would want to finish. Obviously, colleges want to get an idea of your child’s writing, not yours, so don’t write it for him. That would be cheating. But helping him go through draft after draft (whether it’s you or your child’s school’s college counselor) should be helpful and will also be a good learning experience for him. And since many colleges strive for diversity, it might be helpful for your child to write candidly about his disability and the challenges he’s had to overcome.

  Getting Ready to Go

  Once you start getting those letters of acceptance, you breathe a big sigh of relief, then rejoice, celebrate, and … panic! You may even be a bit more panicked than the parent of a typical child because you have spent your life fighting for your child’s rights—advocating, protecting, and overseeing—and now you’re giving up the hands-on control you’ve always had. But you need to take a moment to celebrate this huge accomplishment and everything you’ve done for your child to get where she is.

  Your child is going off to college. He’s an adult now, and he’s going to be on his own. But of course you still want to do anything and everything in your power to make the transition as smooth as possible for him.

  Now that we’ve had a number of college students come through our clinic—some of whom went on to complete graduate degre
es—we have a good idea which areas we need to focus on to make our students’ life at college successful. Read on.

  Make the Freshman Comfortable Beforehand

  Your child will have a number of opportunities to visit the college she will attend prior to the start of school. Take advantage of them! The more times you can visit and familiarize her with her future home, the easier it will be for her when the time comes to move. Check out activities and organizations in the area—not just at the college, but out in the community as well. Find the places where students gather: church groups, clubs, restaurants, movie theaters, and so on.

  We know one mother who brought her son to the UCSB campus at least a dozen times during the summer before he started there as a freshman. These weekly visits helped him learn where to eat, where to get money from an instant teller, where to buy books, and where his classes would be. She was able to introduce him to support staff and faculty on campus whom he could call on when he needed help. This made a huge difference for him.

  If geographic or time constraints make it hard for you to get to the campus ahead of time, take advantage of the Internet: download maps of the campus and search the school’s Web site with your child so you can figure out together which buildings are which and where she can go to meet people. Contact other families with kids going to the same school and see if you can arrange an early meeting. The school may not be able to give you this information because of confidentiality, but you may be able to get information about students who are going to the college from your local high schools. Also, you can contact professors and find out if they might be willing to “mentor” your child (many are enthusiastic about this) and have them help your child connect with other students.

  Finally, your child will most likely get the names of his roommates sometime during the summer. Make sure that he’s in contact with them so that he can learn ahead of time about their interests, habits, and preferences. You can then prime him on appropriate ways to engage with his roommates about topics and activities that they’ll enjoy. Again, anything you do beforehand can make a difference in the success your child experiences while at college. Also, talk to him about conflict resolution. Any group of people living together for a year will have conflicts. Discuss how to resolve them appropriately, how to compromise, and when to give in.

  Take Classes Ahead of Time

  Many colleges offer summer programs for high school students, both for the summer before your child applies to college and the one after she’s admitted. Summer programs often offer a residential option so your child can get used to dorm life. If the school your child is interested in offers summer classes, it will give her a chance to experience dorm life and get a real feel for the school—while alerting you to any potential challenges.

  And if your child is already enrolled there for the fall, a college’s summer program can give him a useful head start on his course work. As an incoming college freshman, your child can earn course credit and be enrolled as a regular student. Our daughter did this the summer before she started UCLA and it was great for her to get the “lay of the land” and seek out opportunities to work more intimately with faculty in this large school before there were massive numbers of students on the campus during the regular school year.

  Academic Life at College

  How Much Parental Involvement Should There Be at School?

  There’s a huge difference between how much parents are involved in their kids’ college lives today compared to the past. When I was a college student, my parents sent me off, and I was on my own. The only time they found out about my grades, major, social life, or any other college-related information was when I volunteered it. That isn’t the case anymore. Overly involved parents of college-aged kids have been dubbed the millennial parents, and they are dreaded by college professors, staff, and administrators because they want to micromanage their adult kids’ lives. They complain about their child’s roommates and what they believe (from afar) is unfair grading, and they don’t hesitate to call professors about changing test dates or to challenge the grades their child has received in a class.

  I have mixed feelings about this, because kids on the spectrum don’t usually have great educational programs unless the parents are actively involved, so we encourage parental involvement in general. We even require parents to come to parent education sessions to learn the procedures for working with their child—their involvement means their child’s success.

  But college is a more complicated issue. On a practical level, some students, even those who are already being highly pressured by their parents, refuse to sign a waiver for college staff to talk with their parents about them. We’re still able to talk to their parents about general information, but without permission, we can’t talk with them about any specifics. Fortunately, most of our students on the spectrum are willing to sign the confidentiality waiver, so we can talk freely to their parents. I find this helpful, but not essential.

  Parental involvement is most valuable when the student is first enrolling in college. As we described above, parents can and should help their kids get set up and familiar with the services, facilities, staff, and buildings at their new school. Many programs have specialists in the disabilities office who can oversee the student’s program, and provide a real person for the student to contact for support and aid. These specialists usually ask the students to come in regularly and to contact them before there’s a serious problem. Unfortunately, the students don’t always do this. We’ve known many who have waited until they were on academic probation to let anyone else know there was a problem. The disabilities offices don’t receive the student’s grades, so the bulk of the responsibility is on the student’s shoulders to seek out assistance when necessary.

  While they might try to contact the student if they hear that she’s skipping class or having some extreme problems, ultimately it isn’t the responsibility of the staff at the disabilities center. College students are adults and are expected to take responsibility for their own educational success. So if you feel that your student needs more intensive monitoring than the disabilities office is set up to provide, you may have to arrange that yourself by finding a fellow student, classmate, or staff member to help out.

  College is about giving our kids choices and opportunities and helping them develop their strengths through higher education, but for all that to happen, it has to be successful, and unless you do some advance work, there’s a very real chance it won’t be. You need to prepare the school your child will attend. Go to the disabilities office. If they don’t have a lot of experience with kids on the spectrum, educate them. Have them keep track of your child while he’s there and provide the support he needs. If you feel it will help, have them contact your child’s professors and politely explain what support he may need to be successful.

  Some of our students require more monitoring than others. We’ve had a couple of college students who simply stopped getting up in the morning and going to class. So you need to have someone checking up on your child. To find someone who can do this, ask first at the disabilities office or any specialized counseling or autism center the school might offer, but if you can’t find anyone through them, you may need to hire a student to help out. Students are always looking for work, and something that doesn’t require a car and can be done on campus fits the job requirements of many.

  Finally, most colleges have career and counseling centers. In addition to the general college offices, some departments (such as psychology) have practicum clinics where supervised students can have hands-on experience. The students at these clinics can help with behavioral, psychological, or social challenges your child may have.

  Again, when picking the college for your child, you should research these services and help your child become well aware of them during orientation and prior to the start of school.

  The short of it is don’t leave your child’s success at college to chance or hope. Make sure a supportive system is in place
before problems arise.

  In the months before your child leaves home to go to college, you need to work with her on the strategies she’ll need to stay academically afloat in the years to come. Remember: you won’t be there to manage her time, her studying, or her relationship with her teachers for her. Take advantage of the time you still have together to help her figure out strategies for ultimately navigating all those things on her own. Some of these skills will come in handy during high school, others she won’t need until she’s actually at college—but at least you’ll have made her aware of what lies ahead.

  Time Management

  The whole college experience is so different from high school. The kids go from thirty hours a week in school and twelve hours a week of studying to twelve hours a week in classes and thirty hours a week studying. This is a huge adjustment for most kids—there just isn’t the same kind of structure to their days. Many have trouble the first year of school because they just don’t know how to manage their time, no one is checking on them, and it’s human nature to procrastinate.

  After all the work of getting into a major university, you don’t want your kid flunking out because he didn’t make it to class or finish an assignment. In addition to having a support system in place (see previous pages), you should work with him on the skills he’ll need to stay afloat.

  The most important piece of advice? Get him to use a calendar. Many parents of kids on the spectrum are so used to hauling their kids from here to there and keeping track of every appointment that they haven’t taught their kids to keep a calendar for themselves. This is a critical skill for college life and the sooner you teach your child to keep her own calendar, the better. It can be paper or electronic—whichever kind she’s more likely to maintain and look at every day. Get her started doing this before college so it’s a habit by the time she goes.

  Once he’s using a calendar, have him learn to schedule study time into it. College requires discipline and a lot of work outside the classroom. Your child will need to schedule daily study time. Again, this is a habit you can get him started with ahead of time, while he’s still in high school. He’s much more likely to realize that he can’t meet friends on a Sunday evening for dinner because he has a test Monday morning if he’s already written down “study for test” on Sunday’s schedule.