Growing Up on the Spectrum

by Lynn Kern Koegel

  Last year, when I was frequently teased in some of my classes, it got bad enough that I asked my therapist for advice. This one kid would stare at me and would pretend that I was staring at him all the time, which made me furious. He would also point and laugh at me whenever I made faces and also teased me, saying he thought I acted like I was “retarded.” My therapist told me that the best way to deal with teasing is by ignoring others who make fun of me and by just not getting involved. At first I thought that it would not be too effective, but oddly enough, it actually really worked out well.

  I do not remember anyone actually acting like they were my friends when they really were making fun of me. I have definitely been peer pressured before though. An old best friend was a good friend to me in elementary school and middle school, but then once we went off to high school, he started making me do some stuff I really did not want to do. This all happened when my friend came over to my house. At first, I thought that there was no way to get out of it. Then I realized that I was actually feeling uncomfortable and did not want to do anything with that friend anymore. So then I told my mom about it. I was worried that she would get mad at me for all of the stuff I did with my friend. I was very honest and told her that my friend was really forcing me to do things that made me uncomfortable. This probably would have easily been avoided if there was more supervision, but whenever I am with friends, I do not like to be watched by my parents the whole time. I actually think that would have made it worse, because in the past, my parents did not know that whatever my friend and I were doing in my room was happening. I did not feel comfortable alerting them about this earlier. The bigger problem was that this kid did not listen to me and bossed me around a lot.

  My mom understood my problems and got mad at my friend, feeling my emotions. The one thing I really learned from that was to stand up for myself when I felt uncomfortable doing something. Even nowadays, I still have trouble standing up for myself when I do not want to do what my friends are doing.

  I do not remember actually bullying anyone. I have only teased people back who have made fun of me, especially when I have been in a bad mood. I knew it was a bad idea, but there were times when I felt like that would be the most effective in getting someone to stop teasing me. It actually turned out not to be and only caused them to make fun of me more.

  Fortunately, I have never gotten in trouble for teasing anybody. I am a nice person most of the time and know that making fun of other people (for no reason) would only make me look like a worse person to be around. One of the reasons for that was that my parents have always treated me kindly and have given me important lessons on how to deal with rude kids, from first grade to now. My parents used to tell me that whenever I was being teased, use my words, and instead of fighting, walk away.

  For kids who are being bullied or teased in school right now, if I were you, I would not listen to that person’s comments. The best idea is to ignore whatever that person says. If that person has teased you too much, I would also strongly suggest talking about it with a school counselor. I also suggest that you do not talk back to that person; it only makes the situation worse and that will actually tell the bully/teaser to make fun of you more often. Another thing you could do is talk to a good friend about it and ask him/her to see what they would do.

  Most of the time, I have stayed quiet when I have seen people being teased because I felt like it was best not to get involved. However, I remember when I was in ninth grade, approaching two kids I did not like who were saying rude things about one of my best friends. At least my friend was not there to hear those kids’ conversation. Then I came into the conversation and told them that my friend was a nice kid and that they were just being rude to him a lot of the time. That ended their conversation about my friend and they finally started talking about something else.

  Frequently Asked Questions

  My son wants to spend time with a boy whom I don’t trust. He seems very fast and I’m concerned that he manipulates my son into doing things he shouldn’t do. On the other hand, beggars can’t be choosers, and my son really doesn’t have any other good friends. How can I make sure this is a healthy friendship?

  In this type of situation, you’ll need to weigh the pros and cons. If the peer is going to lead your child into destructive behavior, you’ll need to stop the friendship immediately and work hard to find other peers. On the other hand, if the peer is basically a good kid with just some poor judgment due to lack of maturity or lack of knowledge about your child’s disability, it may be time for a little chat. And if you don’t want it to seem as if Mom and Dad are too involved at this age, ask a school counselor, popular teacher, babysitter (or are they called drivers in middle school?), or even an older sibling to initiate the discussion.

  My son is the gift who keeps on giving. It seems as if every kid at school has either borrowed money from him or asked him if he could buy lunch or a snack for them “ just this once.” Of course they never remember to pay him back. I’ve tried telling him he needs to insist on getting his money back, but even when he tries, he comes back with “She said she didn’t have the money on her today and she’ll pay me back another time.” He’s just an easy mark. He’s so eager to be liked that he keeps falling for the friendly smiles—and the requests that always go with them. How can I get him to be savvier and to distinguish between a real friend and someone who just wants something from him?

  First of all, you may want to make a rule that he can’t bring money to school. If he doesn’t have money to lend, the kids can’t harass him. If this means buying lunch tickets, you’ll need to do that. Next, if you think some of the kids might really need snacks, throw in an extra bag of chips now and again and let him share them. That way, they won’t be bugging him for money, but he’ll get to be known as a nice guy. Finally, if he’s easily swindled, that’s something you’ll have to work on. As much as we’d like to teach our children that everyone is good, this may be a great opportunity to teach him the meaning of a true friend. True friends wouldn’t take advantage and that’s just what the kids you’ve described are doing. Make sure that your child understands that friendships are reciprocal, and if friends are willing to share with him or lend him money, that’s one thing, but if it only goes one way, it just isn’t right.

  My son has been treated badly by a kid in our neighborhood, and my husband wants to teach him to hit back. Our son is a big kid and with some training, he might even be able to win a fistfight. But his sense of boundaries is shaky and I’m terrified that if we don’t have a hard-and-fast rule (no hitting ever!), he may hit the wrong person. My husband says we’re basically teaching him to be a victim for the rest of his life. What do you think?

  Even though the kids who hit back at a bully are the ones who are less likely to be bullied in the future, it isn’t a good strategy to teach. A better approach would be to work on the other fronts and make sure that there’s supervision when he’s around this kid and that adults are keeping an eye out. And if you can, talk with the bully and/or his parents. It may be high time someone taught him how to treat others.

  SECTION III

  Making and Maintaining Successful Romantic Relationships

  1. Introduction

  My daughter, who’s on the spectrum, is in eighth grade. I saw on the school calendar that a semiformal dance is coming up. I asked her about it and she said that kids are going as couples and no one has asked her to go yet. Even though I’m slightly relieved—I’m not sure she’s ready for this and I know I’m not—I’m also concerned she’s feeling left out. How do I help her start getting asked out on dates?

  CLAIRE

  Just when I thought I’d figured out how to parent a kid with autism, nature and time upset everything again and turned my adorable little innocent into a teenager with a changing body and a growing interest in the opposite sex. Puberty waits for no mom.

  Up until now, I thought I was doing everything right for Andrew. I’d spent countless hours teaching h
im the skills that other kids acquire naturally, like how to talk or have a conversation or share an opinion or join in a fun activity or comment on how awful the cafeteria food is, and so on—all the goals Lynn and I wrote about in Overcoming Autism. Whatever the situation was, I knew I could sit down with him—or find a well-trained interventionist to do it—and quite literally teach him what he’d need to do at preschool or elementary school the next day.

  And then one day I realized that my child wasn’t a child. He was a teenager with an ever-growing interest in girls. And I thought about all the things he would need to learn over the next few years. Things like

  How to catch someone’s eye without looking as if he’s trying to catch her eye.

  How to flirt, maybe by saying something that’s almost insulting—but with a certain impishness that implies he really means the opposite.

  How to touch someone’s hand just lightly enough so she thinks maybe he meant to do it but isn’t sure (but he meant to do it).

  How to get his friends to ask her friends if she’d like to go to the dance with him.

  How to hold hands with a girl.

  How to kiss a girl, but only if she wants him to.

  How to know whether or not a girl wants him to kiss her.

  The more I think about these things (and the list could go on and on, of course), the more I want to scream, “Wait! I could barely figure those things out for myself when I was a teenager. There’s no way I can teach my child with autism any of that.”

  Well, yes, that is the problem, isn’t it? How do you teach what can’t be taught? We used to find ways to expose Andrew to new activities before he’d have to do them for real—like playing baseball in the backyard before he’d have to play at school—but we can’t take him into a darkened make-out room at a party and show him what he’s supposed to do (and not do) there.

  Andrew is coming up on an age filled with locked doors and private places, and that scares me. I want to help my son find a great girlfriend and start down the road toward one day being in a happy relationship, but isn’t that something he can only do by himself? How can I even begin to help?

  The only thing that’s clear to me is that when it comes to romance, a parent has to change her approach, work on the things she can work on, encourage her child to take some chances and trust his own instincts (and hope she’s already successfully instilled the right values), and ultimately, know that her child, like you, me, and everyone we know, will at some point suffer in the name of love.

  Fortunately for us all, Dr. Koegel has some more specific and immediately usable advice in this area.

  DR. KOEGEL

  How and when kids get together romantically varies tremendously. I remember taking my daughter to the movies when she was in elementary school. To my shock and horror, there were kids from her class on dates. Real dates, with holding hands … kissing … arms around each other. And all that with no adult supervision. These weren’t teens—they were ten-and eleven-year-olds. I think I was in such a state of shock that I spent more time watching them than I did watching the movie!

  This was, admittedly, young to start dating. While there is some variation, most preteens still hang out with kids of the same sex. But when they reach about fourteen or fifteen, they start spending more time with members of the opposite gender. At this point, it isn’t usually romantically meaningful, and these relationships only last a few months.

  From the age of about sixteen on up, teenagers begin to develop more serious relationships that can last several years. As Claire mentioned, most of these relationships happen gradually and spontaneously, so we worry about teens on the spectrum who have had social difficulties and who may not have been full participants in the wildly complex social jungle of peer friendships in elementary and middle school. And while there is some research on the dating and sexual habits of typically developing teens, it’s based mostly on self-reporting, which means there’s always the risk of over-and underexaggeration, or just plain inaccuracies.

  So all we really know is that serious dating does start in the teen years, and no one wants her or his child to be left behind. Unfortunately, there just hasn’t been any research about how to facilitate dating with kids on the spectrum and therefore little to no guidance for parents who would do anything to help their children find some romance at a very vulnerable age. Here at the clinic, we’ve watched a number of individuals with autism and Asperger’s grow up and develop successful romantic relationships. So we know it can happen. When we study them carefully, we can analyze that success and pluck out some crucial tips for helping your child follow in their foot-steps.

  One quick note: in both this chapter and the following one on sexuality, we often talk about the “opposite sex.” We’re simply using that as shorthand for any romantic object—it’s important to remember that as far as we know, the prevalence of homosexuality is the same for people on the spectrum as it is for typical people. Any advice we have about romantic or sexual relationships is as true for a homosexual relationship as it would be for a heterosexual one, so even though we may simplify things by referring to the opposite sex, our goal is to include same-sex relationships in any discussion. Please see the Frequently Asked Questions in Chapter 3 of this section for more specific advice for the parent who thinks his child on the spectrum might be gay.

  2. Dating

  My daughter who’s on the spectrum came home happy one day because a guy at school asked her to go out with him. Then he didn’t call, and someone told her later he was just joking. She was devastated and I was boiling mad. I promised her that someday a good guy would ask her out for real. I just wish I could do something to make that actually happen. Any ideas?

  CLAIRE

  A close friend of mine recently got divorced and found herself back in the dating game. The ensuing emotional roller coaster got me thinking about my own ancient dating past, and I vividly remember how violently I careened from the highs (having a great time with someone interesting) to the lows (not having that interest returned). I felt an immediate rush of relief that I didn’t have to go through all that again.

  Most of the people I know really haven’t done that much dating—it’s something you do for only a limited part of your life, usually after college (because it’s so easy to hang out with a member of the opposite sex in college that you don’t really have to arrange “dates” while you’re there) and before marriage. And, of course, sometimes between marriages. I’m sure there are people who spend longer periods of their lives dating, but in general, we don’t have to do all that much of it.

  But during those times, nothing feels more important. It’s impossible to put yourself out there romantically and not start feeling judged. You question everything, especially yourself. Am I what he wants? Is he what I want? Am I settling? Am I reaching too high? Is it just physical attraction? Why isn’t there more physical attraction? Could this be someone I might one day want to marry? If not, should I bother spending more time with him?

  I remember feeling rejected. And I remember rejecting people. That’s what dating is all about, right? Sorting through, figuring out what works and what doesn’t? You can’t do that without discarding people along the way.

  It’s so hard. Five minutes into most first dates, people have already formed an impression of the person they’re meeting alone for the first time. (“Always arrange to have drinks first,” a friend once counseled me. “That way, you can get out of it without committing to an entire evening, but if it’s good, you can go on to dinner.”) By the second date, you’re starting to think about getting physical. By the third, you’re probably talking about going back to your apartment or his.

  At least that was how it worked in my day. The unwritten rule book has probably changed in the last couple of decades, but the one thing that doesn’t change is that there is an unwritten rule book.

  Imagine going through all this murky, undefinable, judgmental, potentially humiliating mess we call dating with th
e extra social difficulties that come with being on the spectrum.

  My sister loves to quote Cole Porter’s “There’s a boy mouse for ev’ry girl mouse,” and I believe there is (although I feel compelled to add that sometimes boy mice go with boy mice and girl mice with girl mice. I’m sure Cole would have agreed). Our kids can and should find someone to spend their lives with. It’s just unfortunate that the process of finding that person requires using all our social skills—the weakest area for most kids on the spectrum.

  DR. KOEGEL

  As I said earlier, we do know quite a few adults on the spectrum who have very happy romantic lives. Although there hasn’t been much research in this particular area, I’ve extrapolated from each happy relationship to come up with advice that might help your child achieve the same wonderful, universal goal.

  Read on for some successful strategies that you can use to help your child start dating.

  Priming

  As we discussed in the general information chapter (Section I, Chapter 2), priming involves going over an activity prior to when it happens—essentially rehearsing it. There has been a lot of effective research done on priming, usually focusing on academic and social activities.

  The basic principle behind social priming is that if you run through what is likely to happen in a social situation, like being greeted and needing to respond in kind, you’ll increase the likelihood that your child will successfully repeat the practiced behavior when the real situation occurs. While some professionals like to use pictures as prompts, the literature shows that simply rehearsing the situation verbally helps just as much. And for older kids, it is more age appropriate to just discuss the upcoming social situation and appropriate ways to interact in that situation.