Growing Up on the Spectrum

by Lynn Kern Koegel

  My least favorite subjects are probably English and math. English is tough for me because my reading comprehension is not great; it is harder for me to write thorough analytical essays (essays that represent an argument), and I also do not have a great vocabulary. Math is also hard for me, because you need to solve complex problems and take a lot of steps to solve (such as proofs in geometry).

  I am happy that I am getting close to going to college and living independently, but I do not want to have to go through the tough process of getting into college. I am really looking forward to being able to major in something that I want to do later for my career. I am also looking forward to being able to wake up whenever I want to make it to class in time. I am a little scared about having to pay expensive bills and not being able to afford a lot of things that I will need for school.

  I think college will be very stressful in some ways because of work but also a great experience being completely on my own. I would definitely like to live with roommates who are nice and welcoming, but I would not like to live with roommates who are rude and make me miserable. My ideal college would probably be a college on the East Coast (like in Florida or New York) that has a great graphic design and animation program and that has mostly nice kids and professors. I want to major in Web site building, game making, or animation, so I would like my college to have good computer design programs. I am definitely worried about the application process, mainly because I am not familiar with it. I hope my parents and my college counselor at my school will be really helpful to me when I am applying to colleges. I am also worried about my grades in the future and just hope to work really hard throughout the rest of my high school year. Even though I had decent grades in ninth and tenth grade, I want to work even harder in eleventh and twelfth grades.

  Frequently Asked Questions

  The teachers at my son’s middle school like to have kids partner up for projects or even work in small teams. This is always agonizing for us. First of all, the other kids partner up really quickly, so my son, who’s on the spectrum, usually ends up with someone who has behavioral problems whom no one else wants to be with. Second, his partners usually take advantage of him, because he’s a real innocent: they’ll tell him he has to do most or all of the work, and he’ll just go ahead and do it, often with a lot of difficulty. When I said to him once, “You shouldn’t be doing it all—you should divide it equally,” he said, “I’m just trying to be a good friend.” Any suggestions for dealing with this in the future?

  This is a difficult issue that you really need to discuss with the school staff. The reason I say this is because there is some research that suggests that if the teachers randomly pair up the kids, they don’t enjoy the activity as much as when they’re allowed to work with kids they choose. So in a sense, when the teachers let them choose their own work groups, they are doing what they should. On the other hand, it’s important that your child not be taken advantage of or constantly be paired up with a partner who’s not a good role model. I suggest that you talk to your son’s teachers directly and make two suggestions to them. First, the teacher should ask students to write down on a piece of paper the name of the person they want to be with so she can honor their requests but also include the kids who are less likely to be requested. If possible, she should make it clear what your son’s strengths are to the rest of his group or his partner, so they can appreciate having him included. She also needs to make sure that all participants play an equal role in group activities. We all remember group assignments where we ended up doing most or all of the work. The teachers can alleviate this problem by dividing the assignment in such a way to ensure that each child does equal work or is required to note which sections he did. Group projects are a good idea but do have to be carefully planned with many things considered.

  Again, kids do better if they can choose their own work groups or partners, so if your child’s teacher is willing to make this happen, he may have a whole classroom full of happier students. There will be kids in the class who’ll work well with your son—the teacher needs to find those kids and make sure they’re part of your child’s future teams.

  My daughter is being left out socially—she eats lunch alone every day. I feel that we should appeal to her classmates directly for support, but my husband is adamantly opposed to it. He says that if we tell everyone she has autism, then she’ll always be “that autistic girl” and no one will ever accept her as just another kid. I know what he means and the last thing I want to do is make socializing harder for her, but the way things stand now, she’s completely isolated. Do you have any advice?

  It’s important that she be active socially, and if your husband doesn’t want her to be labeled, that’s understandable. However, I have done social groups without labeling the students. In fact, I set up one for a middle schooler, and the students asked me what was wrong with the child, but because his parents had been adamantly opposed to having the other children know he had autism, I simply said he had some difficulty making friends. They were fine with that. The important thing is that you get a support team and program in place so that she isn’t alone every day. That needs to happen right away before she gets even further behind socially.

  My son failed a couple of his courses and now the school is saying he should be in special ed. But I’ve seen the special ed classes and those kids aren’t learning much of anything other than how to bake cakes and wipe off tables. I want more for my son, but how do I get the school to keep him fully included?

  If your son is failing, the school needs to make some curricular revisions. This can be done in a variety of ways. He can be required to complete only part of the work, or the problems can be simplified for him so that they are the same problems the other kids get but are at his level. They might also be able to give him more time to complete his work or prime him beforehand. There are many, many ways to revise the curriculum to help a child experience success in the regular education classes. My guess is that they haven’t taken the time and energy to explore all the curricular options that can help him be successful.

  Back in elementary school, class trips were a day-long visit to a local museum. But now that my son is in middle school, I’m getting all this info about the “seventh-grade class retreat”—there’ll be one every year from now on! Frankly, I’m terrified. My son will have to share a room with other kids, be responsible for his own belongings and hygiene, participate in a ton of group activities, and eat whatever they serve him. I’m not sure he’s ready to do any of that. But I’m worried that if I keep him home, he’ll miss out on a chance to connect with the other kids and it will only add to his feeling different from the others. Please advise!

  There are a number of things you can do on these overnight trips. The most common one is to volunteer to go yourself, as a parent chaperone. The schools usually request support from parents and you may want to volunteer. If you can’t go, consider asking a relative or close family friend. If you just can’t find anyone who wants to go, or if the school refuses to allow parents to go at all, you can prime your child for the upcoming experiences. If he can read, send notes reminding him of what’s expected of him at any given point in the trip. Make sure that the teachers pay extra attention to him, both in picking compatible roommates and throughout the trip. Thanks to cell phones, you can keep in constant touch these days as long as it’s not a really remote location—and if it is, get the landline number there, and make sure there’s an adult whom you can contact regularly to offer advice and give assurance. And remember, these trips usually last only a few days. If his hygiene isn’t perfect or he doesn’t change his socks, he’ll still survive.

  3. College

  I can’t believe my son is going off to college! His high school grades have been really strong and he has some friends. Even though he’s doing great in so many ways, he still has some social difficulties and finds change hard to deal with. How can I help make the transition to college successful without hovering and smothe
ring him?

  CLAIRE

  On the list of things I’m thankful for, the fact that my son is still two years shy of heading to college is way up there. It’s not that I don’t want him to go—and it’s certainly not that he doesn’t want to go, because he can’t wait—it’s more that I’m terrified. There are too many unknowns at college. He’ll be spending time with people I haven’t met, walking in neighborhoods I haven’t been to, going places I don’t even know he’s going to, and experiencing emotional swings I won’t be able to monitor and help him through. I want him to go to college and I want him to succeed there. But part of me also wants to keep him safe at my side. We have a good community college within a couple of miles and sometimes I drive by it and wistfully think, “Couldn’t he just go here and live at home with us for another year or two?” That’s not what Andrew wants, though, and I’m glad. I want him to experience college the way I experienced it: leaving home and living with other kids my age. But even for me, it was fraught with social and academic challenges beyond anything I’d known before. How is he going to navigate all that? How much support can I offer him from far away—and how much should I offer him?

  DR. KOEGEL

  Things have changed significantly in the last few years in the area of higher education. The great news is that many kids with autism are responding so well to intervention that they are able to go to college and develop a career. It also means that this is new territory for all of us.

  In the past, we’ve had a handful of kids on the spectrum who completed four-year degrees, or even graduate school, but they were few and far between. Now, however, we’re experiencing a geometric increase in the number of students on the spectrum who are enrolling at a university. We’re just beginning to develop programs to address their academic and social needs. Unfortunately, there are many areas to be addressed that still lack research and experience, such as rooming, getting a support staff in place, picking the right college, and so on. But we are having some success and can discuss the things that are working.

  Just remember: college is scary. Kids think it’s going to be great living on their own with a whole bunch of other eighteen-to twenty-two-year-olds, but I’ve had two daughters successfully survive college and I know it’s hard. It’s kind of like a feast-or-famine thing. When they’re home with all the rules, restrictions, and responsibilities, they think college is going to be the key to independence: no curfews, no bedtimes, no having to clean their rooms, no hounding mom—complete freedom. And it’s true. But the flip side is that suddenly they have to handle everything themselves, from managing their time to laundering their clothes to budgeting their money to fighting their own battles with unfair teachers and unfriendly roommates. Complete freedom isn’t a vacation—it’s a long and arduous lifetime undertaking.

  Meanwhile, we parents have our own anxiety to deal with. We’ve done everything we can for our kids on a day-in-and-day-out basis, and all of a sudden they’re gone. We worry about whether they’ll make friends, get passing grades, wander into trouble with all that freedom—basically we worry that they won’t be able to survive without our support.

  And of course the anxiety is worse for parents of kids on the spectrum. They already know their kids have had a tough time learning to socialize, and now they’ll have to be social all the time, even back in their dorm rooms. Will they be able to succeed in courses that aren’t in their particular area of interest or will they completely lose focus? What about their social life? How will they do at school parties? Will they be more susceptible to peer pressure far away from home? Will they be lonely?

  Well, fortunately, we are beginning to help more and more kids on the spectrum succeed in college. And it’s best not to leave it up to chance. Here are some ways to help your child have the best possible college experience.

  Helping Your Child Prepare for College

  SAT Prep

  Oh, the dreaded SAT! It’s geared for the mainstream kid and not for those who excel in one specific area or the child who has communication difficulties, so it’s no wonder it can strike fear into the heart of the parent of a kid on the spectrum. Here are some things that may help your child:

  First, there’s the PSAT that children as young as seventh-graders can take, although it’s primarily geared toward sophomores and juniors. This early exam gives students a chance to practice under real-life circumstances, and if their scores stand out, schools will often recruit them. The PSAT will help you and your child learn which areas he needs more practice and tutoring in. This way you can address your child’s weaknesses and strengths and figure out what kinds of scores you can anticipate on the SAT. Second, you can help your child strengthen areas of weakness by having him study SAT preparation books. SAT prep courses and tutoring can be helpful too. Many colleges have SAT prep courses during the summer (my daughter had a great time one summer when she took an SAT prep course and an art class at Yale University), and that’s a great way to have your child get a taste of college life. A little extra practice may boost his score enough to push him over the edge at some schools.

  There are dozens of study programs to help prepare your child for the SAT, and there are some accommodations for students with disabilities that you can request on the actual SAT.

  SAT Accommodations

  If you feel your child needs extra support in the actual taking of the test, certain accommodations can be arranged. You and your child’s school will have to fill out some forms documenting the disability and requesting the desired accommodations from the testing agency. Your school is probably familiar with these requests and will be able to help you out, but make sure you start the process well in advance of the time your child will take the test. Requests have to be in several months before the testing dates so the testing company can review them.

  Here are some of the more common accommodations that can be helpful for kids on the spectrum:

  • Altering the test format. If your child has trouble with written tests, the testing agencies will make adjustments so that there are fewer items on each page. They can also use a larger font and different colored paper. In some cases, you can have the instructions and the test items read out loud to your child. These accommodations will simplify and decrease any confusion your child may have with the actual test.

  • Altering the way the responses must be made. Many of our students have difficulty with filling in the little answer bubbles and also handwriting an essay. You can request that your child be allowed to respond verbally and have the answers transcribed. If handwriting is a problem, your child may be allowed to use a computer for writing essays (although grammar and spell-checkers are not allowed). He may also be allowed to dictate answers into a tape recorder or use a larger block answer sheet. These types of accommodations may make responding easier for your child.

  • Altering the timing and scheduling. Many children with autism have sleep disorders, and if your child just can’t respond well at eight o’clock in the morning, you may be able to request the time of day your child takes the test or ask to have the test given over a few days. Your child can also be provided with extra time (usually time and a half) to complete the test. Or if your child needs more frequent breaks, that can be arranged too.

  • Altering the environment. Some kids just can’t work with distractions. In fact, I remember that when I was an undergraduate student and spending the bulk of my waking hours in the library, if someone at the cubicle next to me started talking or tapping a pencil, I always found it impossible to concentrate. If your child is distracted by other people in the room, you can request that she take the test in a smaller group setting or private room. Special lighting, acoustics, or screens to block out the distractions are also possible. So the bottom line is that you can have your child take the test anywhere she will do her best, whether it be at the front of the room or in a different room altogether.

  CLAIRE

  We haven’t had to deal with the SAT yet, but Andrew had to take th
e Independent School Entrance Examination (ISEE) twice, once to apply to sixth grade and once to apply to ninth grade.

  It did not go well either time.

  The first time, we requested and received an accommodation: Andrew took an untimed test in a special location, with only a few other kids who had requested the same accommodation. Unfortunately, the “untimed” part was a bit too literally true: there was no definite end time, and when Andrew finally stumbled out of the test many, many hours later, he was a wreck (as were we, because we had been waiting for him with no way to communicate). With no one telling him when to stop, he had mulled over the test for far too long, agonizing over the answers he couldn’t get, wondering if he was supposed to stay even longer, uncertain what was expected of him. The extra time only prolonged the torture, and the accommodation meant he took the test in an unfamiliar place surrounded by strangers, rather than at his own school with his friends.

  The second time, thinking we had learned our lesson, we had him take the regular test at a regularly scheduled time and location—no special accommodations (I am, by the way, well aware of the irony of our turning down accommodations for our kid who’s been diagnosed with autism, while helicopter parents all over Los Angeles are desperately inventing “learning disabilities” for their NT kids in the hopes of getting them more time on the SAT and therefore a leg up in the college battle). Once again, he stumbled miserably out of the exam, but this time it was because the poor kid was burning up with a fever. He had come down with the flu in the three hours it took to take the test. Our subsequent attempts to explain away his low scores by saying that he “really was sick” to various school admissions staff were met with exactly the kind of raised eyebrows and skepticism you’d expect.