Growing Up on the Spectrum

by Lynn Kern Koegel

  I’m still kind of amazed to hear myself say stuff like that—I was the sort of student who was ready to throw herself off a building if she got below an A minus, and I really thought I might be that kind of mother. It’s kind of a relief to find out I’ve grown up since then.

  DR. KOEGEL

  How to Be an Involved Parent

  As I have mentioned, your child still needs your support once she reaches middle school and beyond—you just have to give it to her from a farther distance than you used to. Here are some ways to still be there for your middle or high schooler, while giving her room to grow.

  Keep an Eye on Things

  Try to find out what’s going on at your kid’s school without driving her crazy. Call her teachers or counselor on a regular basis. Some schools encourage e-mailing as a simple way for parents and teachers to communicate, while others discourage it. Find out what the policy is at your child’s school. Ask the lunch-duty teacher about the kids your child hangs out with. Good teachers who care about their students appreciate having any concerns brought to their attention and want to help. They may even help facilitate social interaction.

  And if you want and have the time, find ways to lurk around the school. Be creative about it. I sometimes waited until lunchtime to bring that important permission slip to school so I could see how free-time socializing was going. Or if one of my daughters forgot her lunch, I would hang out until she had a break and hand deliver it—observing her in class the whole time. Forgotten homework papers and items always provide a good opportunity to drop by school. There are also other ways to keep an eye on your kid without his being aware of it or feeling burdened by your attention.

  Go watch your child play sports, see him in the school play, cheer him on at the spelling bee. And do it regularly. Even if your child protests, make it a rule. Middle and high schoolers are OK with rules and if you simply say, “Most of the parents go to the games and I’m going too,” that usually suffices. Think of ways to make yourself liked by your child’s peers. For example, you and your child can bring a case of cold water to a ball game or other sports event. You can take pictures of the kids and have your child hand deliver them. You and your child can make armbands with the school colors that he can give the kids to wear to the school games. Or bake cookies for the school plays (and let your kid sneak a few to good friends ahead of time). In other words, try to set it up so the other kids are saying you’re really a cool parent.

  One quick note: a cool parent is still a parent. Don’t go for just the cool part and forget about the parent part. Middle-and high-school-age kids do not want their mothers to dress or act as if she’s their age. They want parents the other kids can respect and talk to, not one who’s competing for Cutest Girl in the Class.

  If you can’t often go to the school yourself, you can also help your child by sending in things that facilitate social communication, like cool sports car magazines, a great new CD, or just some special snacks to share. These will be great conversation starters—and sharing at the middle school ages does help to make a kid popular.

  Spending Even More Time at School

  Children on the spectrum may need more on-hand parental support than their typical peers in middle school. Try to volunteer at school if you can or start up a new club, so you have a useful reason to be around. Another possible way to get involved is by tutoring. Kids will appreciate some extra help with algebra, writing, or whatever else you’re good at.

  One girl we worked with was having difficulty getting to know other kids at her middle school—she had quite a few repetitive and idiosyncratic behaviors and the kids just weren’t including her socially. Angelina’s mom was a talented amateur photographer, so she decided to teach a group of kids how to compose, shoot, and print photos. They took photos every week at school and also went on weekend and afternoon outings to take some landscape pictures. At the end of the semester, she helped them turn their photos into beautiful albums. The kids enjoyed Angelina’s mom so much that she provided an instant group of kids for her daughter to spend time with.

  Like Angelina’s mother, try to figure out something you can do with your child’s peers that they’ll enjoy and that your child likes. Here’s one easy idea that works for us every time: kids love to make desserts, so you could conduct an afterschool baking session or have kids come over to cook at your house.

  Having more adults present decreases bullying and teasing, so even if you don’t have a specific activity to do at school, volunteer to walk the halls one lunch a week (and be sure to greet the kids cheerfully when you do it). Carefully planned involvement can help your child on the spectrum and all the other children who are having trouble adjusting at this age.

  Be Involved—But Don’t Encourage Dependence

  Having said all that, if your child is overly dependent, you will need to gradually and systematically phase out your presence in his school life. I’ve worked with a few parents who simply couldn’t let go when it was time to do so.

  As much as we enjoy being around our children and want to be helpful to them, especially if they’re on the spectrum, we can’t do this to the point of hindering their peer socialization. So if your child is overly dependent on you, make a concerted effort to transfer the fulfilling of her needs to her peers. If she forgets her lunch, ask a nice peer to hand deliver it when you drop it off. If she is by herself at lunch, make sure she joins a club—even if you’re not the one who runs it. If she’s always at home hanging out with you on weekends and after school, make sure that you have other families over with children her age.

  In short, you need to carefully analyze your teenager’s responses to you and figure out a comfortable level of involvement that allows you to supervise your child without compromising his burgeoning (and necessary) independence.

  Help Your Child Meet Other Students Ahead of Time

  Once you know which middle or high school your child will be attending, it’s time to make sure she gets to know some of her classmates ahead of time. Summertime is a great time to set up some get-togethers. Even if your child is continuing on with many of the same kids, if she’s been having social difficulties, take this chance to introduce her to some new peers or reintroduce her to those she never got close to but who you think have the potential to be good friends. If you want to throw a get-together for a bunch of kids, see our advice in Section II, Chapter 4 on how to throw a successful party.

  You can also find out what types of activities, camps, and school events are going on in the summer and get your child involved in those that are likely to have a lot of his future classmates in attendance.

  Supporting Their Efforts to Make Friends at School

  There is some research that suggests that typical peers often feel that individuals on the spectrum aren’t as giving as others. If this is true of your child, make sure to prompt him to give a high five to his buddy when he does something well, or e-mail a compliment when a friend gets a good grade, or make a cute cupcake or bring a Baggie full of cookies for a pal on her birthday. Sharing and giving are great ways to improve your child’s friendships, and she or he will be learning about ways to develop and maintain good relationships all through life.

  See Section II for more ways to make and maintain friendships at school and in the community.

  Encourage Your Child to Join a Sports Team

  Team sports are a huge part of middle and high school life. When I talk with my children about their social lives in middle and high school, they both talk about how much sports helped socially. Everything from hip-hop classes to organized school sports provided my children with an instant group of friends.

  In elementary school, kids who participate in team sports often do them at a recreation center or park. But once they’re in middle school, kids can play on their school team, and it can be a huge bonding experience. Sometimes it takes a few tries before you hit on the sport that’s a good match for your child. One of my daughters loved basketball and volleyb
all but, unfortunately, she inherited my gene for (short) height and couldn’t really compete with some of the almost six-foot-tall girls. It was heartbreaking seeing her sitting on the bench during the games, but all the other kids absolutely loved her because she was a good sport and always cheered them on. I can’t tell you how many awards she got as Most Spirited Team Member and Most Enthusiastic Team Member. We did finally find a sport that she became really good at (tennis), so don’t give up if you don’t find something that fits right away.

  As my daughter’s basketball experience shows, even if your child isn’t the greatest athlete, he can still be the team’s greatest supporter. Teach your child to cheer on other team members and give them high fives when they score. This will help with team spirit and make your kid very popular among the crowd. Remind him that simply being available for practice and cheering on his teammates at games makes him a valuable part of the team.

  Here might be a good time to mention the importance of making sure the activities are age appropriate. Don’t encourage your child to play dodgeball, hopscotch, or T-ball if only elementary schoolers play those games. Since a huge part of getting your child involved in sports is for social reasons, you want to have kids who are the same age playing with him.

  One other thought: I’ve known really caring coaches who’ll give less athletic kids a boost by “hiring” them as their “assistants.” For those kids who find playing on a team too challenging and frustrating, having a different kind of role to play can make them feel really important and help get the other kids to look up to them. Of course, you’d have to talk to the coach privately about this and see how he or she feels—not every school can arrange this. But I know one little boy who got a real social and emotional boost when he got to carry a clipboard and whistle as the “assistant coach.”

  CLAIRE

  The middle school that Andrew went to had a no-cuts athletic policy. Andrew had never played a team sport before he got to middle school (we tried some out, but a ball heading toward him made him flinch and cower when he was young). In sixth grade, at a brand-new school, he suddenly decided he wanted to be on all the teams. You can imagine what his skills were compared to the other kids’.

  But his school had an “everyone plays” policy and very kind coaches, so onto the teams he went. And, overall, it was a positive experience. His biggest contribution was keeping the benches nice and warm, but he was so enthusiastic and so obviously admiring of the others’ abilities that his teammates seemed to get a kick out of him. We tried supplementing the coaching he got at school with some one-on-one instruction at home, and I think the coaches appreciated the extra effort. He did improve quite a bit, although he started at such a disadvantage that he never caught up.

  I will admit that the games were agonizing for me to watch, so I delegated the job of cheerleader to anyone I could: my father, when he was in town; Rob, when he was available; our babysitter, when the timing worked out … I felt guilty not being there myself, but the truth was that the games alternated between being incredibly boring, because Andrew wasn’t playing, or absolutely terrifying because he was. I was desperate for him to get through the few minutes he was allowed to play without any huge disaster that might annoy the other kids, like fumbling the ball or stumbling against a teammate. I never cared what the final score was or whether his team won or lost—only whether Andrew felt OK about himself at the end or not.

  Andrew’s willingness to put himself out there and try to do something that difficult in public was inspiring. My son has always been willing to face challenges I would have run away from like the coward I am. He’s the bravest person I know.

  DR. KOEGEL

  Look for a Job Your Child Might Be Able to Do in the School Community

  Everyone likes to feel valued and important. Giving responsibility to a child with social difficulties can really boost her morale. We worked with one child who had difficulty interacting socially but was extremely bright and a great reader. The junior high school counselor suggested that he work at an elementary school, tutoring low-income children in an afterschool program. The program was so successful that pretty soon the principal was asking for more volunteers. About eight other children joined up and all the kids carpooled together, which gave them more opportunities to interact. Discussing the progress of the children they tutored gave them plenty of topics of conversation. Abe now had a social life!

  Explain the Situation to Her Classmates (If You’re Comfortable Doing So)

  If your child has some unusual behaviors, and the other kids are noticing, you may want to meet the issue head-on and have a frank heart-to-heart talk with her classmates. Obviously this is an immensely personal family decision, but I have found that, in general, knowledge and understanding tend to promote goodwill. (See Section I, Chapter 2 for detailed instructions on how to conduct the conversation to make sure it’s successful.) We’ve had several families do this with great success, including Melissa’s.

  Melissa had been complaining that the kids at her charter school weren’t being nice to her, so her dad felt that it was time to take action and ask the whole class to be more supportive and explain why. Read on for Juergen’s first-person account of the speech he made to her class and its successful outcome.

  JUERGEN

  There is a weekly gathering at the school where my seventh-grade daughter Melissa goes. Melissa had increasingly complained about her peers teasing and making fun of her. This was a serious distraction for her in class and affected her work, so I decided to talk with her classmates. Melissa didn’t attend the gathering.

  As Dr. Koegel had suggested, I began by talking in very general terms about how everyone is different, has a different personality, genetic makeup, and so on. I asked the students if they knew anyone with physical disabilities. Many hands went up. I pointed out how we would normally be aware of someone’s physical disability (such as being in a wheelchair) but that this is not always the case with someone who has a neurological disability, as Melissa does.

  I then asked the students if they could tell me how Melissa was the same as everyone else, and how she was different. Many students spoke up. “Melissa has excellent retention”; “She gets angry and frustrated, hits the computer keyboard, throws books down on the floor”; “She’s sweet”; “She’s smart”; “She seems a lot younger, she’s short in stature and plays with toys, animals”; “She tattles on other students”; “I’ve seen her in class looking into books she seems very interested in” were some of the things mentioned by the students. Next, I talked about the symptoms of autism, with examples relating to Melissa, such as her meltdowns or aggression.

  Toward the end, I said to the students, “Just ask yourself how you would feel if you could not express yourself very well, or could not easily ask for something, did not have many friends, or were unable to pick up on social cues.” I asked some kids to tell me how many good friends they felt they had, and most mentioned some number around three. Then I said, “Well, Melissa feels she has no friends in this school.”

  I welcomed them to help Melissa, and several students came up to me afterward, including a student who had seen Melissa on the bus. He asked how he could help and has, in fact, since taken Melissa from one class to another whenever possible.

  But by far the biggest reward of my one-hour talk came later, at the end of the school day, when Melissa called me and said, “Dad, ever since you gave your speech, everyone has been nice to me including my worst enemies.” Her work at school has improved enormously since then, as all the teasing that she endured was, in fact, a huge distraction for her.

  ANDREW

  I think that the biggest difference between middle school and high school is that in high school, you have more freedom. In middle school, you do not have free periods and cannot go off campus during breaks, but in high school, you can. In high school, you also have more electives and can choose some core classes that you would like to take (such as in science).

  For
me, it is really tough to decide whether I like middle school or high school better. In high school, you get more freedom, but in middle school, you get less homework and it is not as challenging. Kids have probably been nicer to me in high school, even though there are still some kids who are jerks. My middle school was so small that everybody would just talk to one another and I was the one kid who could not really relate to other kids. In high school, I have more close friends and I can relate to the kids more than I could in middle school.

  I think that school is hard in some ways but easier in other ways. Work and tests can sometimes be hard in school, but my finals are actually not too hard, but still stressful because you need to dedicate your time to them. What I would say helps me most in school is my tutor, who has been a huge help with my academic work (with organization and the actual work). My parents have also been a huge help because they have really helped me study for quizzes by quizzing me on the subject that I am studying and also by editing certain papers I’ve had.

  The most helpful thing in school is taking notes in classes so that I could refer to them later for assignments or tests. I like teachers at my school who are extremely nice and helpful, ensure that my class knows the material, and who write information down on the board so that I can understand it more easily. I do not like teachers (who I tend to find too hard) who go through the material too fast, who assign too much stressful homework, and who talk too fast without writing information down on the board. I am more of a visual learner than an auditory learner.

  My favorite subjects are probably foreign languages, science, visual art, and PE. Foreign languages are easy for me because you really only need to memorize words and conjugations in order to nail them down. I kind of like science as well because you can do fun experiments and it can be interesting to see the way things in the world work. I like visual art because I am a person who likes to draw and create things, and in art, you have the chance to do both of those things. PE is a nice break from academic classes and instead of sitting down, you can get good exercise from running and playing physical games.