Growing Up on the Spectrum

by Lynn Kern Koegel

  The change in school is huge too: middle schools and high schools are usually much bigger than elementary schools, and there are many new kids to deal with as well as a different teacher for each class. In some ways that last part is good, especially if your child ever got a not-so-great teacher in elementary school whom she was stuck with every day, all day, for a whole year. But changing classrooms and teachers every period has its own set of challenges, which are primarily social—kids hang out together in the halls between classes and walk from one class to the next with their friends, so it’s potentially another challenging time for children with social difficulties.

  Despite some of these radical changes, it’s important that you understand that your child doesn’t change and become a teenager overnight. Children gradually grow and gradually want more independence. That’s healthy and appropriate. And it’s healthy and appropriate for us as parents to accept and even encourage the changes. When they’re in those middle and high school years, they shouldn’t still be clinging or begging us to walk them into their classrooms or to call their friends’ parents to set up playdates. If they’re not coming to the joys of independence on their own, we need to help them get there.

  You’ve Got to Have Friends

  During these years it’s more vital than ever for the socially awkward child to make friends. Fortunately, there are lots of things parents can do to help their teens in the middle years—read Section II on making and maintaining friendships for specific ideas.

  One thing to keep in mind is that for many kids in this country, middle school is the toughest time socially. None of us want our kids to have a bad two or three years, but it’s rare to get through this time without a few painful moments, even if you’re not on the spectrum. It’s important to remind your child—and yourself—that social life almost always improves in high school, where the kids are more mature and more comfortable with differences. Kids stop needing to be like everyone else and start celebrating their varied interests. High school classes also tend to be bigger than those at middle school, and I’ve heard many kids say that while they never felt that they fit into a social group in middle school, they found a great group of lifelong friends in high school. So tell your kid to hang in there if middle school feels lonely—things will get better—and let him know he’s not alone.

  The Good News About Middle and High School

  In many ways, it’s actually easier to have a child who’s on the spectrum in middle and high school than in elementary school: you don’t have to worry about your child having one potentially unhelpful teacher all day, every day. At most middle and high schools there are a number of different teachers for each course, and some of them really welcome children on the spectrum.

  Most middle and high schools have more electives and more class choices. This gives your child an opportunity to enroll in classes she may find more interesting. Being able to choose both the teacher and the course can make middle and high school a much more enjoyable and successful experience.

  But here are also some important things that parents need to think about with their middle and high schoolers on the spectrum:

  Inclusion Is Still Important

  I’ve noticed that many middle and high schools do less inclusion than preschool and elementary school. They often place the kids in “special,” less demanding classes or in career development courses. There is no reason why a child should not be fully included in middle and high school—both academically and socially.

  We had one mother who got so frustrated with the school system that she started homeschooling her son. While I’m not opposed to homeschooling for some children, children with social difficulties need to learn how to interact with their peers. This particular mother didn’t have that component in her homeschooling program, and consequently, although he was very bright, he didn’t have any peers to model his behavior on—only his mother. So as a teenager, he acted just like her. Because women in their forties don’t have the same topics of conversations, the same activities, or the same interests as fourteen-year-old boys, he was quite the misfit. Even the jokes he told weren’t jokes that fourteen-year-olds tell. While this is an extreme case where the child had no social opportunities at all with other children, it illustrates the importance of maximizing opportunities for your child to interact socially with his typical peers.

  It Needs to Be the Right School

  These days, more and more schools are providing the opportunity for interdistrict transfers, and if your child is on the spectrum, you may have an even more legitimate reason for selecting a specific middle or high school. Remember, principals and teachers make the difference. If the school isn’t receptive to (and, ideally, enthusiastic about) working with your child in both academic and social areas, and if the staff there doesn’t have ideas—lots of ideas—for how to support your child as well as previous successful experiences working with kids on the spectrum, keep looking. We’ve seen firsthand that the principal’s values and the teachers’ dedication are crucial to making our kids’ programs work.

  I recently visited a high school where, in the course of chatting with me, the principal referred to the kids on the spectrum as “those kids” and talked about “their programs” in “their special education classroom.” It was as if these kids were aliens in “his” school—there was no sense that they were part of the community. Not surprisingly, that school didn’t offer any good programs for kids on the spectrum.

  Schools that celebrate diversity and are committed to the best education for each child, regardless of learning styles and needs, best suit our kids.

  They Still Need Support—But Also Their Space

  No matter where she falls on the spectrum, your child still needs support. This may be particularly important for socialization. At elementary school, there are lots of games, sports, and other activities going on around the playground, but in middle and high school, the kids are mostly just hanging out. They also spend a lot of time hanging out during nonschool hours—typical teens spend close to twenty hours a week hanging out with friends outside of school. While just sitting around shooting the breeze and complaining about teachers may not play to your child’s strengths, do try to find as many opportunities as possible to get her together with friends, even if you need to structure that time to make it successful.

  If your child isn’t making friends, try to find clubs and fun classes he can take outside of school that will get him involved in a peer network. (Read Section II on making and maintaining friendships for more about that.)

  Kids on the spectrum are often more willing than their typical peers to go to the movies or out to dinner with their parents. I’ve even had high school parents talk in detail about their child’s social difficulties in front of them while they sit and listen with no sign that it’s embarrassing for them (and it really may not be). As nice as it may be to feel that your child isn’t yet pushing you away—as most teenagers are doing to their parents—you also don’t want her to seem babyish at a time when teasing and one-upping one another are such a huge part of the daily interaction. Save parent/child time for when you’re at home together and encourage your child to be as independent as possible around her peers.

  Be a Team

  Teens, whether they’re on the spectrum or not, figure out really quickly whom to ask for what. If he wants a later curfew, he knows Dad is likely to say yes. If he wants a bigger allowance, he learns that Mom’s a soft touch. My husband and I figured out early on that our kids were dividing and conquering—trying to get a yes out of one of us even when the other said no—so we made a policy of discussing any big questions together before either of us would commit to an answer. Teamwork makes anything stronger. Consistent programs coordinated across both home and school environments will ensure that your child is getting his work completed and his homework finished, that everything that is supposed to get home from school gets there and everything that is supposed to get back to school also gets there.
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br />   To make sure this happens, you’ll need to have regular communication with those most intimately involved in your child’s education by e-mailing regularly, checking in on the phone, and holding monthly team meetings. Open communication and regular meetings will help you address any potential problem before it becomes too big to handle.

  You want to make sure from the very beginning that the principal and school staff are willing to provide a friendly environment that will support your child. I have been at schools (most recently a high school) where the principal clearly viewed the kids on the spectrum as irritants and wanted them sequestered in the special education classroom. This isn’t teamwork. Support from your principal is critical to your child’s success, and if the principal isn’t supportive or willing to give you any time, you’ll need to either find another school or have a third (more educated) party attend meetings as an advocate. I have attended many IEP meetings in schools where principals or other staff members were not willing to provide needed social support and/ or inclusive settings.

  Continue to Reward Your Child for Good Behavior

  One thing parents often forget, especially during the teen years, is that kids need just as much praise and positive reinforcement now as they ever did—and maybe even more. Even if they roll their eyes when you praise them, keep doing it. Figure out what’s rewarding to your child during the middle and high school years and provide this abundantly when your child is behaving. Remember, kids on the spectrum often have to make more of an effort than their typical peers to socialize or stay tuned in or write that essay. Don’t ignore the effort. Praise and rewards at this age are still incredibly important.

  Studying, Academics, and Homework

  Kids on the spectrum can vary wildly in regard to academics. Some are at the top of their class across the board, some are good in certain areas but not in others, and some need help in just about every area. I’ve learned that there are a few things that are really important when it comes to supporting your child’s schoolwork.

  First, in regard to curriculum, many special education staff members are happy to have middle and high school students engage in work without any regard to whether they’re actually learning anything or not. In fact, I have seen special educators dumb down the curriculum so much for some fully included kids that they weren’t learning anything at all, making the classwork so easy that it was no more intellectually stimulating than sitting in front of the television all day. Make sure your child is learning in school. Make sure that she’s acquiring new and useful information during her hours at school. And make sure that the school is expecting the most of your child. To do this, you’ll need to check over her work and periodically observe.

  If your child is essentially being babysat and not taught during school hours, you’ll need to call an emergency IEP and make sure that the goals are changed. Then keep on top of the school—make sure they document the acquisition and maintenance tasks and that everyone who interacts with your child is aware of the new goals.

  Homework

  We know that making homework meaningful and practical increases the likelihood that a kid will complete it. If the teacher is open to suggestions and can easily make changes to the assignments, suggest that he use the kids’ names and fun examples on the problems—those little connections can really capture the kids’ interest while they’re doing their work.

  But making sure homework gets done is your job. You don’t have control over what the teacher assigns, but if your child doesn’t like the assignment, you can improve his motivation by giving him choices, like where to sit while he does it, the order in which he completes his different assignments, the type of writing tool he uses, and so on. If it’s just too much for your child, you can always request that he be required to complete a only portion of the homework. And remember: always let him do a fun activity after he’s finished his homework, something that’s worth working for.

  And last, organization is critical. Time management will help her the rest of her life. You don’t want to be a constant nag, but you do want to help her learn to organize herself so that you only need to check over things. Many kids on the spectrum are dependent on adults to move them through every step of doing homework. If your child expects you to walk her through her work, there are several ways to deal with the problem. First, many schools have afterschool homework clubs on campus. If your child needs to learn to do homework independently and to gain organizational skills, those can be IEP goals. If your child’s school doesn’t have any homework clubs, see if she can get a study hall where the teacher will work with her on independent completion of assignments.

  If you want to work on this at home, first you’ll need to coordinate with the school to make sure your child is actually writing down the assignments and bringing the work home. Teachers can be a great help with this. Have them let you know immediately if your child isn’t completing assignments. We had one middle school girl who told her parents she had finished her assignments every night. It wasn’t until the open house that her parents learned she was the only student who didn’t have her work up on the board. While her parents fixed the problem by hiring a college student to help with organization and homework completion every day after school, many weeks had passed before they even knew there was a problem.

  One quick note: many middle and high school teachers now post assignments online, which is a great fallback if you or your child wants to double-check what’s due. Unfortunately, online assignments cannot be relied upon completely because not all teachers post online and some forget to post assignments on a daily basis. Your child needs to get in the habit of writing down her homework assignments for each and every class—it’s an important skill and the most reliable way to stay on top of things.

  After you make sure your child is getting the assignments and the work home, you may want to do a functional assessment to figure out why he’s having trouble with his homework. If it’s because the work is just too difficult or he’s missing key academic areas that make it impossible to complete, you’ll need to talk with the school staff about filling in those gaps and helping him with strategies to complete the homework independently. If it’s because he likes the attention when someone is helping him, then you’ll need to systematically and deliberately give him loads of attention every time he completes his homework independently.

  Start with very short periods of time of independent study and work up to longer period gradually. You can even use self-management to monitor gradually increasing periods of time that she works independently and then reward her for those periods.

  It’s also possible your child is interacting with you to avoid doing the homework, engaging you in conversation and using comments or even disruptive behavior as a means of putting off getting down to work. If that’s the case, you’ll need to set up a reward or incentive system for getting started. This can be done by simply giving him a special treat or allowing a favorite activity after some predetermined amount of homework is finished (remember—start small). And finally, remember to include those motivational components we discussed in Section I, Chapter 2.

  So the bottom line is stay connected. Make sure your child is learning and make sure she’s getting work completed. Stay on top of things—don’t wait until it’s too late.

  CLAIRE

  Schoolwork can be so hard for Andrew. He’s incredibly bright and some things come more easily to him than other kids, like, say, memorizing dates or names, but other things are just hard. Like figuring out what the hell Shakespeare is getting at with all those endless metaphors. Or trying to write an essay on a J. D. Salinger story when the characters never say what they mean, but you’re supposed to know anyway.

  Now that he’s in high school, some of his teachers run their classes like mini college courses, lecturing for the full hour and expecting the kids to take the kind of notes they can later study from—not so easy if you’re someone with language-processing issues.

  Andrew sailed
through elementary school academically. He was an early reader and, as I said, a good memorizer, and none of the work was very challenging for him (social life and navigating free time were a different story). Middle school academics were definitely more complicated: different teachers meant different teaching styles. He thrived with the teachers who broke down everything into simple facts and struggled with the ones who were confusing or long-winded. Rob and I didn’t always have the time, patience, or knowledge to help him figure things out, so we engaged a tutor and still use one today.

  We look at Andrew’s tutor as a sort of interpreter. She’s able to restate the ideas and information that he doesn’t always absorb during the fast-moving, fast-talking class lecture or discussion. She’ll also read through any literature assignments with him and, again, help to interpret—you could almost call it translating—the complicated world of metaphor, innuendo, and nuance that is so incredibly difficult for my very literal son to absorb.

  With and without the tutor, Andrew works unbelievably hard. I rarely pass by him on a school night without seeing him typing away on a paper or trying to figure out a math problem. He really wants to do well. Sometimes he does. Sometimes he doesn’t. Either way, I always tell him how proud I am of him for putting in so much effort. And I am. I’m not just saying that because you’re supposed to praise your kid for working hard—I’m awed and humbled by my son’s work ethic.

  Not long ago, I quizzed him on some study guide questions for his global studies class. He had memorized every bit of information on all five closely typed pages. I told him he was going to do great on the test, and I really thought he would. He got a 60 on it (the teacher wasn’t interested in memorized facts; she wanted the kids to talk about the bigger, thematic issues). When he told me about his grade, head hanging low, I was able to say with absolute honesty, “I saw how hard you studied and I’m really proud of you. As far as I’m concerned, you did great.” “Really?” he said, perking up. “Really,” I said.