Growing Up on the Spectrum

by Lynn Kern Koegel

  Motivating a Socially Unmotivated Child

  Sometimes social situations can be scary, especially if your child has anxiety about interacting and wants to avoid his peers. If this is the case with your child, you can gradually desensitize him. To do this, you will need to make a list of activities that are low-anxiety producers, medium-anxiety producers, and high-anxiety producers. Then start with those low-level ones. For example, if a movie, concert, sports event, or school play would suit your child just fine (especially because you don’t have to talk much), then start with that. If the next level is a one-on-one get-together, move on to that after he feels totally comfortable with the low-level activities. Gradually working up and having your child feel successful at the low-anxiety level will usually help reduce the anxiety when you move up to the medium-anxiety level, and so on. The main point is to move up the levels so slowly and gradually that your child doesn’t experience anxiety. And if you move too quickly and he expresses some discomfort, step back and stay at the previous level a bit longer until he really feels comfortable there.

  ANDREW

  I have about two or three really close friends and a lot of friends that aren’t as close. I keep adding on new friends all of the time, so it is hard to count. Most of these other friends are guys but I know some girls too. I mainly go out with my friends during the weekends (not every weekend) and during holidays or breaks. I hang out the most with my close friends. What I like about my friends is that they are nice and funny; we share some common interests (which is not everything of course).

  When I go out with friends, I hang out at their houses, go with them to see movies, go to hang out at malls. We have sleepovers, and every now and then I do other exciting activities with them (such as going to theme parks, paintballing, vacations). My favorite outings with friends have probably been going out to malls to look at stores, seeing movies, having sleepovers, and also going out to theme parks every once in a while. When I go to parties, I usually like going with a relatively small group of friends I can relate to and who are nice, but I also like going to big parties with nice kids.

  My least favorite outings with friends tend to be when my friends and I are just hanging out at one person’s house without really doing anything else, just talking without any activities. The activities that I prefer doing at other people’s houses, however, are watching movies or TV shows, playing video games, going online, and going swimming.

  My least favorite parties, however, tend to be when I am at a party with other kids I cannot relate to. I have trouble relating to kids who are not very nice, who tend to be bossy, or nice kids who are just talking about people I do not know or only about parties.

  There was one party that I went to where I was with kids I used to go to middle school with, where I had trouble socializing with them. Even though I liked these kids and they were nice, all we were doing was talking to one another. These kids were only talking about other kids they knew whom I did not.

  The middle school I went to was small, and I did not make any close friends, so it was harder for me to socialize with more kids when I went there. But now it is really not that hard for me to ask someone what they want to do outside of school for the first time. I have met my closest friends at my high school, mainly because I feel I can relate to them more than others. Even though it is not too big, my high school is diverse and everybody is different, so there is always someone you could meet and talk to a lot. I met these kids through talking to them on the school grounds and having classes with them. Then, once we felt like hanging outside of school together, we exchanged phone numbers and screen names. Now we call one another and then do things outside of school together.

  Sometimes, it is fun to just go out with one person, which I normally do. However, that is not as much fun as going out with a whole group of people with many people you could choose to talk to. Over going out to a movie or going out to a mall, I would actually prefer going out to see a movie, which I used to do all of the time, but have not done as much nowadays. I would prefer seeing a movie, because instead of just looking around at a mall, you are watching a source of entertainment while you are out, and seeing images that make you laugh, some that use great special effects, and some great actors and actresses, which you do not normally see at a mall.

  I really like sleeping over at friends’ houses, because then you get to spend more time with your friend. There is one really close friend I have whose house I almost feel at home sleeping over at.

  When I am hanging out with friends, we almost never fight. Sometimes, I am flexible and let my friend decide what we do. Most of the time, however, I give ideas and ask my friend to see if he is okay with it or not. People I know definitely have parties I am not invited to, but they don’t tend to be my close friends. When I hear about that, I am most of the time jealous, but not that I get really angry. I have thrown a couple of big parties, but not in a while. Most of these parties have been for my birthday. Nowadays, for my birthday, I do not really have parties, but I go on outings where I really just invite my closest friends. For my birthday parties, we would just hang out at my house, go to a theme park (such as Universal or Disneyland), or just have gone out to see movies.

  I have also met other friends at a social-skills group I attended. I think these groups are useful for other kids with autism, but I don’t feel I really needed to learn anything they taught. It is also a good opportunity to make friends and it is also a good place to express your feelings with other people. However, there can be some kids (who I am not friends with) who have a lot of problems with their social skills, who often have strange behaviors they do in public, and who ask inappropriate questions a lot of the time. In these groups, we did activities, played games, talked as a group, and we would also just hang out. I have gotten together with a few kids I have met in group. There were certain kids with social-skills problems that I have gotten together with in the past, but now I just like to get together with other kids I like and who don’t have social-skills problems.

  My perfect day with a friend would probably consist of going out to some theme park or movie and having a nice lunch there. Then we would have a pretty expensive dinner at a place with delicious food.

  Frequently Asked Questions

  I feel as if I want friends for my daughter more than she wants them for herself—I’m always chatting up the girls at school and inviting them to do fun things with us, but she never initiates anything herself (although she does seem to enjoy these outings when they occur). If I ask her to pick up the phone and call someone, she simply won’t do it. How do I get her to care about making friends? I’m sick of being in charge of her social life, but if I stop, so will it. Any advice?

  Initiating activities is more important than you might imagine and very difficult for kids on the spectrum. We’ve found with our lunch groups that if we initiate specific activities, the kids on the spectrum are likely to stay with their peers for the rest of the lunch, but as soon as they’re left to their own devices, they’re back to being alone again. So you’ve hit on a very important point: we do need to teach our kids how to initiate activities. But calling on the phone and asking a friend over, when socialization is difficult and there’s a chance of rejection, is a tough way to start. We want early attempts to have a high likelihood of success and therefore be intrinsically rewarding. So start more simply.

  For example, start with having her invite relatives over. You can arrange it all ahead of time so you know her invitation will be accepted.

  You can also have her initiate as part of a group. For example, we had one family that planned a party for friends of friends, and the planning group got to send out the invitations. This took the pressure off having just the child on the spectrum doing all the inviting. Even bringing in one other person will make a difference—recruit a friend or peer to organize an event with your child and have them invite people together.

  And once your child is ready to extend invitations all on her o
wn, still work for her success by making those invitations as irresistible as you possibly can. Have her invite a friend to a specific exciting event rather than just to hang out. That will greatly increase the odds that her peer will say yes.

  I’m a single mother with five kids and I just don’t have time to organize parties for my son or shadow him on outings or anything like that. But I know he wants more friends. Can you suggest some ways to increase his social life without putting more of a burden on me?

  It may be helpful for you to explore the multitude of activities in the community. Some of our most asocial teens are amazing actors in drama classes. Sports teams and chess clubs also provide opportunities for socialization outside of the home setting. Volunteer work can also be helpful in getting your adolescent or young adult into activities that will help him learn to interact with others.

  Since most schools have a community service requirement, perhaps your son’s school can help you find activities where he’ll be able to interact positively with peers. For example, one of our high schoolers goes to the pound after school to walk dogs with a few other students from his class. Another of our middle schoolers reads to preschoolers at the homeless shelter a few afternoons a week.

  Jobs can be great for older kids. We have hired a few young adults to help at the university, and this gives them lots of opportunities to interact with peers. So look around, and try to find activities that your child will enjoy and where there will be peers to interact with.

  4. Parties

  I read your first book and learned how to help my little girl’s social life by throwing small, fun parties that made the other girls want to come over. But now that my daughter’s in middle school, it doesn’t seem as if parents are nearly as involved in their kids’ social lives. The girls call one another at the last second to all go to someone’s house for sudden, impromptu parties—for all I know, the parents don’t even know about them! I want my daughter to be part of this interaction, but I’m not sure she can really handle a party that doesn’t have a specific, timed activity and parental help. Can I still control parties even though other parents have stopped?

  CLAIRE

  Sometimes I feel as if my greatest contribution to this book is in the “what not to do” department. (Remember Goofus and Gallant? I’m Goofus.) Here, for instance, is what not to do when it comes to throwing parties.

  Andrew had just started at a new middle school right before his thirteenth birthday, so we figured we’d invite all the kids in his class to watch a movie in our backyard by projecting it on the side of the house. (Cool, right?) We hadn’t realized what effect inviting both boys and girls would have on the adolescent boys, who got very rowdy in their efforts to impress the girls. As soon as they got to our house, they started acting up, wrestling and fighting, and disappearing into the dark parts of the backyard to do Lord knows what. I found myself confiscating various sporting goods, such as baseball bats, which they were using as weapons, and threatening to call parents and send kids home, which did not win me any Coolest Mom of the Year awards.

  When we finally managed to corral the kids into seats to watch the movie, the projector wouldn’t work. While my husband tried frantically to fix it (with the help of Dr. Koegel’s older daughter and a friend of hers who had stopped by to say hi to Andrew on his birthday), I desperately—and I do mean desperately—tried to keep the kids from getting completely out of control by engaging them in guessing games. They were way too old to stay amused with that for long, and pretty soon we once again had twenty kids screaming and running wild in our backyard.

  By the time Rob got the projector to work, it was too late: the kids were too revved up to sit and watch and just wouldn’t focus on it. Then it started raining, so we brought them inside (no more cool outdoor movie—we played it on the TV, which was boring) and then some of the boys decided it would be fun to run around outside in the rain with their shirts off even though I begged them to stop. When the parents came to pick them up a little while later, our house looked as if we had staged a reenactment of Lord of the Flies. Not only were the parents annoyed that their kids were wet and half naked, but Andrew told me afterward that a bunch of the kids had told him his mother was too strict and had yelled at everyone too much! It’s not often someone gets into trouble for being too lenient and too strict, but apparently I managed it.

  Instead of improving Andrew’s social life with this party, we actually damaged it—the thing had disaster written all over it—and I went to bed that night (after popping a much-needed Xanax) discouraged and determined never to throw another party again for any of my kids.

  Of course we have. But never one like that. Since then, we’ve kept our parties small, with a handpicked guest list, and we’ve always made sure we had plenty of specific activities for the kids to do. In fact, for Leo’s recent fourteenth birthday, we had a dinner party with his closest friends and planned a ton of parlor games that kept them busy from the beginning of the party until they sat down at the end to watch a Simpsons episode on our TV (I’m never relying on a digital projector again!)—and it was a total success.

  So the moral is don’t invite too many kids (and handpick the ones you do invite), have plenty of activities and a fallback plan if something goes wrong, and remember that adolescents will rage out of control if you give them the slightest opportunity.

  And just in case, keep some Xanax in your medicine cabinet.

  DR. KOEGEL

  Middle schoolers and high schoolers and young adults love to get together in groups, which is ideal for kids on the spectrum, since it takes away the stress of having to maintain a one-on-one dialogue. Parents can definitely still facilitate get-togethers and parties when their children are adolescents, but they need to make sure they fade back and let the kids be in charge of their own events. Their supervision and support should all be behind the scenes.

  I remember when my daughter had her first coed pool party. I put pizza, chips, and soda out by the pool, then spent the rest of the afternoon peeking out the window every fifteen or twenty minutes. It started out with the boys on one side of the pool (eating) and the girls on the other side of the pool (not eating). A little while later, one of the girls and one of the boys went for a dip, then the next thing I knew the boys were throwing the girls into the pool. Fortunately, that was about the time the parents started arriving, but it made me realize that kids that age should never be left completely unsupervised.

  While some kids of this age can just hang out together, chatting and wandering around a mall or someplace like that, kids on the spectrum need a more specific activity so they know what’s expected of them and can maintain a related conversation. But once that activity is in place, it’s your job to step back and let the kids take over. And by stepping back, we literally mean that—step back, do not leave. Kids over a certain age have the potential to get into serious trouble if left completely unattended, and an adult should still be nearby during any get-together, ready to step in the second she or he feels concerned.

  Party Time

  Here are specific suggestions to make sure a party will improve your child’s social life, not harm it:

  Provide Some Structure by Way of an Activity

  Providing activities will make it more fun for the guests and easier for your child. Ideally, you would find activities that your child is good at (see the specific party examples below for some ideas), but teens and young adults can usually have fun with a fairly minimal amount of preparation. For example, instead of having a pizza delivered, get a crust, a bunch of ingredients, and have the kids put the pizzas together. Or you can put up a dart board or set the lawn up for a game of croquet. Buy ice cream and hot fudge and let them make their own sundaes. Any small activities you can prearrange for the group will take the pressure off your child and make the event more fun for everybody.

  Supervise from a Distance

  Parties at your home not only allow you to control the activity, but they also give you t
he opportunity to see how your child interacts and, if all goes well, to gradually fade back. No one wants a parent hovering once he or she is over a certain age, so you need to figure out how you can supervise these events from a distance. If things don’t run perfectly, don’t waste time fretting about it, but do try to find out where the trouble arose so that you can work on that area before the next get-together.

  For example, we knew one parent who planned a swim party for her adolescent son. The first part went well, but after the swim, her son decided to go off and play on his computer. So while all the other kids were socializing and having a great time by the pool, he was absent. After that, the mom made sure that the computer was off-limits to her son unless all the kids—as a group—decided to play on the computer. She also kept the next event shorter and busier so he wouldn’t have time to drift away.

  Another high schooler we work with found himself in the uncomfortable situation of having a guest bring beer to his party. Fortunately, he was able to nicely decline the alcohol, and made sure none of his friends drove home after drinking. This is a socially tricky situation for any teenager. As parents, we would like to be informed if an underage guest brings drugs or alcohol into our homes. On the other hand, having been a parent of teens myself and having encountered the negative peer consequences from snitching, I realize that this situation has to be handled in a very careful way. This boy made the decision not to tell his parents at the time, not to drink with the others, and to be sure that they got home safely. By telling his parents later, after the party, he was able to have future parties without inviting the kids who were the ringleaders when it came to alcohol. I should also mention that even though responsible parents should make sure that underage kids are not drinking, I have been surprised about the differences in opinions among the parents of my kids’ friends regarding underage drinking. Believe it or not, there are parents out there who will actually supply alcohol for their kids. So again, while having the kids hang out at your house has its minuses, it does let you be on top of things regarding what’s going on.