Growing Up on the Spectrum

by Lynn Kern Koegel

  1. Introduce yourself. Tell them what a pleasure it is to be there; say something nice about the school, the art on the walls—anything sincere.

  2. Talk about individual differences. Some people have blond hair, others black. Some people have fair skin, others have darker skin. Some people are tall and others are short. Everyone is different.

  3. Talk about common disabilities. Talk about vision problems and how some people wear glasses. Discuss physical disabilities. Ask them if they know anyone who has to use crutches or a wheelchair. Get them talking about different disabilities they may have seen in their families or among their peers.

  4. Now bring in the topic of disabilities you can’t see. Talk about the brain and how many people may be better at one thing than another.

  5. Discuss the symptoms of autism and Asperger’s syndrome. Let them know that many children are born on the spectrum and that it affects them in many different areas.

  6. Share with them personal information about your own child. Tell them about what causes your child difficulties and why. Discuss the things that have happened in your child’s life as a direct result of the disability. Bring up bullying if you’re aware that it’s been going on.

  7. Ask them to openly and honestly discuss things they have noticed that are different about your child. Write down what they say or just express concern. Tell them if you have also noticed those things.

  8. Here’s the important part: discuss ways that they may be able to help your child. Let them come up with suggestions. You can also give them suggestions, but always ask them if they think those would work for them. When you leave, do it on a positive note, with their thinking of ways to help out your child.

  9. Thank them for their time and commitment to helping your child. Have some time available afterward for the kids to talk with you individually, and give them your e-mail address or phone number. Many teens and adults find it easier to talk in a one-on-one situation than in a group.

  For the story of one family’s successful class discussion and peer recruitment, please read Section III, Chapter 2 on making the most of your child’s middle and high school experience.

  SECTION II

  Making and Maintaining Good Friendships

  1. Introduction and Some General Rules About Friendship

  My son is entering high school and doesn’t seem to have any friends. He spends most of his free time at home on his computer. We (and his teachers) have worked so hard to help him academically, but I think that we may have failed at helping him socially. He has a wonderful personality but the other kids just don’t seem to want to be around him. Is there anything we can do to help?

  CLAIRE

  When you first have a baby, you are that baby’s best friend. You (and your spouse, of course) give him all the socializing he needs as you feed, cuddle, sing to and hold him. Once your baby is old enough to go out into the world, you’ll probably seek out friends who have babies roughly the same age as yours; odds are good your toddler’s friends will be the children of your friends.

  Even in preschool, you have a lot of say over whom your kid hangs out with. If you happen to like a mom and enjoy talking to her, you and she might well agree after school to whisk the kiddies off to the ice-cream parlor, where you’ll expect your kid to play with her kid while you and the other mom talk. (And talk. And talk. And talk … )

  In elementary school, kids start to form their own opinion of their classmates, but parents are still in charge of socializing and can quietly manipulate things so that somehow that playdate with Louis (who shoves other kids on the soccer field) never quite materializes, whereas there’s always time to get together with Joe, who’s cute and sweet and whose mother is incredibly nice.

  And then, sometime toward the end of elementary school or the beginning of middle school, there’s a real shift as your kid becomes aware of how friendship works and demands control over whom she plays with. Not only will she insist on playdates with specific friends and refuse to play with others no matter how hard you push, but she’ll also probably be picking up the phone to make her own plans. (Oh, she’ll check with you—but only to make sure you’re available to drive.) That’s when it hits you: you are no longer in complete control of your child’s social life. All you can do now is hope that you’ve taught her to appreciate kindness and substance over popularity and flash and that she’ll stay away from bad influences—and the opposite sex—for as long as possible.

  This gradual shift from parental control to teenage independence needs to happen for kids with autism just as it does for typical kids, but there are, as always, special challenges for them and their parents. First, once parents stop acting as their children’s social secretaries, kids on the spectrum may not have the skills to set up their own afterschool activities and may therefore be shut out of plans the other kids are making directly with one another. Second, kids on the spectrum tend to be “younger” and more innocent than other kids their age and often can’t see through kids who seem nice but are really manipulating them. So we parents worry that if we leave it to them to find their own friends, they might fall for the wrong ones. And finally, if you have a kid who prefers being alone to being with others (who finds it easier and less stressful), then there might be a good chance he’ll simply opt out of a social life altogether if you stop arranging things for him.

  So how does the parent of an older kid on the spectrum help her child find her way to a healthy, happy social life now that she doesn’t have total control over her friends and activities? Can’t we just go back to making them play with our friends’ kids?

  DR. KOEGEL

  The value of having friends cannot be overstated. Friends offer companionship and protect us against loneliness and depression. Friends nurture and support us during difficult times and rejoice in good times. We can open up to friends, revealing the hopes, dreams, and fears we would never tell a stranger. Friends reassure us, advise us, and occasionally even gently rebuke us. Friends offer protection against bullies and mean people. And friends teach us how to get along with others, which ultimately helps prepare us for a happy romantic life and marriage. But as we parents are all too aware, many people on the spectrum have difficulty making and keeping friends. Making and keeping friends isn’t just an extra bonus for these kids—it’s vital to happiness and something parents must help them work toward.

  Over the years, I’ve frequently heard comments from supposedly competent school staff along the lines of “He seems happy, so why not just let him play by himself?” or “We feel she needs time alone to de-stress,” or “We shouldn’t try to force him into interacting if he doesn’t want to.” I must admit that this is a pet peeve of mine. Students of any age who are having difficulty interacting need support. And if you’re reading this and you’re worried about your child with autism or Asperger’s syndrome having to interact when he doesn’t want to, I want to make it perfectly clear that if intervention is done appropriately and systematically, helping your child learn to socialize should not put him in a situation that will make him uncomfortable.

  Read on to learn how to help your child in ways that will only lead to greater social happiness, not discomfort.

  Understanding Why Friendship Is So Important

  Let’s look at the research. It’s been proved that adolescents who socially isolate themselves have more mental health issues in adulthood, are less likely to get—and keep—a job, and tend to have fewer leisure activities as adults. You wouldn’t want any of that for your child, right? Our goal is to help our children develop into productive members of society with jobs and activities they enjoy and friends their own age they can have fun with.

  At our clinic, we work with a large number of adults with autism and Asperger’s syndrome, and almost everyone reports that he or she would like to have a friend or more friends and a significant other. The challenge in achieving this comes from the symptoms they exhibit, which may include the following:

  • hating
to make small talk

  • talking too much about particular topics that may not be of interest to another person

  • not listening enough

  • not talking enough

  • not knowing how to start a conversation

  • not using good body posture or eye contact during conversation

  • talking about inappropriate topics

  • not using the right intonation and voice level

  We’ll discuss each and every one of these areas in the next few chapters, but before we launch into specifics, let’s discuss some general rules that will help your child survive all the complexities of making—and keeping—friends.

  Basic Rules for Making and Keeping Friends

  Learn to Show Appreciation

  Many friends of people with disabilities report that it just doesn’t feel like the person with the disability appreciates them. Interestingly, this is also a pretty common complaint some of my married friends make about their husbands! But they didn’t complain while they dated. What changed? Well, over time spouses often forget to keep telling each other how wonderful they are or to do all those little special things they did when they were dating.

  With this in mind, you can help your child show appreciation for the friends he or she already has. Have him pick out a birthday card and a small gift on a friend’s birthday, even if he’s not going to a party. Have her take an extra piece of dessert to share with a friend. Have him Facebook a compliment or a comment, such as “Hey, that was funny when you spilled that drink last night at the party—glad we got it cleaned up before anyone noticed—I had fun hanging out with you—we should do it again.” Encourage her to mail a friend a post-card while you’re on your family vacation. If he read a good book, suggest he lend it to a friend who likes to read, and if he’s driving home or you’re picking him up, tell him to offer a carless friend a ride. Find ways she can help a friend with a chore, like moving or editing a paper. And anyone can learn to give a friend a compliment. Just make sure that it sounds sincere and not just memorized. (More on that in the next chapter.)

  Follow Your Child’s Interests

  Make sure your child has access to situations and places that will lead to contact with those who share both his age and interest. If your child enjoys chess, find a chess club or let him have chess parties at your home. If your child excels at math, have him join the school’s math team. If your child enjoys cooking, throw a little cooking class. This may seem obvious—after all, it’s not dissimilar to the advice people would give any of us if we were to move to a new town and want to make new friends as quickly as possible. Finding people with similar interests by pursuing those interests in a class, club, or group is a pretty classic and well-proven way to connect. But your child on the spectrum may need you to make that extra effort even if you haven’t just moved or changed schools or anything like that. Most kids will make friends just by being at school with other kids, but your child may well need the extra social boost of connecting with peers who share similar interests—and will probably need you to help him do this.

  Similarly, find your child’s strengths and put her in situations where her strengths can shine. Think about what your child is good at: computers, math, cooking, gardening, singing, reading, memorizing … Then make an effort to find or create a club, class, or event where her strengths will impress people. We once worked with a twenty-two-year-old woman who found social interaction challenging, but she could find any virus in a computer and repair it. She hung out at the university, and the college students were so happy to see her each week because she saved them many a problem finding and killing viruses. She found a way to be sought after and admired, and you need to find a similar strength for your child.

  Seek Out Same-Age Peers

  Throughout our lives, we tend to hang around with people from our own age group. With some rare exceptions, it’s generally a problem if your teen or adult child is spending a lot of time with people who are much younger or much older than he is. I have one client who’s in his thirties and who’s constantly hitting on undergraduate college students. While a fifteen-year age difference may not seem like much to us, it does to a twenty-one-year-old. And so far, this hasn’t helped his social life at all, except to get him repeatedly rejected, and I’ve gently suggested that he work on asking out someone closer to his own age. We also worked with a young woman on the spectrum who met someone online, who ultimately turned out to be a few decades older and was preying on her naïveté, so her parents had to intervene. One high schooler we knew had difficulty getting dates with girls his own age, so he started hanging out with elementary school girls. This was a potential disaster, so we put an immediate stop to it and worked with him to improve his interactions with girls his age.

  If your child is hanging out with the wrong age group, you’ll need to investigate why this is happening and steer him in a different direction while working with him to improve his appropriate social connections.

  Don’t Give Up on Your Child’s Social Life

  You can’t give up. Ever. Most schools do very little to help children socialize, especially as they get older. In fact, if your child is socially isolated but not causing any trouble, the likelihood is high that the school will never address this isolation—it’s the “troublemakers” who get the attention, not the loners. And after high school, society does even less to help socially isolated kids who have been rejected by their peers. So it’s vitally important that you try to facilitate social interactions for your child. And remember—it’s never too late. No one is sentenced to a life of isolation. The future can always be better than the past.

  Remind Your Child About the Responsibility to Step Up

  At some point, the person with the disability is going to have to move forward on his own. As much as we love and want to protect our children, maintaining friendships, falling in love, and getting married are all things they ultimately will want and must take responsibility for. This doesn’t mean we should cut the strings and let them sink once they reach a certain age—it just means we need to encourage our kids to help themselves.

  I’ve worked with many individuals who were so motivated to improve socially that they practiced all the time, and others who just wouldn’t take that last step, who wanted us to do all the social work for them. Guess which ones ended up getting married? The crucial movement toward independence didn’t have anything to do with cognitive level, but everything to do with motivation. A willing and motivated person on the spectrum is likely to have much more success than someone who’s fighting you all the way. And you can help with that. Help your child understand the importance of having friends and relationships. Figure out what’s rewarding for your child and discuss why socialization is important. For example, I worked with a college student with Asperger’s syndrome who wanted to get married so much but resisted my feedback all the time. So if I said I didn’t think that he should wear the same clothes day after day, he really didn’t care, but if I said, “You know, if you want to meet a woman, she’s probably not going to go out on a third date with you if you wear the same clothes the second time,” that made a difference.

  Similarly, we had an eighteen-year-old who wanted to work for us. His most motivating goal was to earn a paycheck. However, he rarely responded to others and never initiated any conversation. When I offered him the opportunity to work a few hours a week only if he could greet people appropriately and answer questions others asked, everything changed. He became a highly social, highly responsive young man.

  If you can help your child find motivating reasons to get along and interact with others, it can make a huge difference in how much your child is willing to work.

  Frequently Asked Questions

  I’d really like to give my daughter some extra support in the social skills area. What do you think of friendship or social-skills groups?

  Friendship groups are fantastic, especially if the leaders recruit a peer clique of typical clas
smates to help out. Middle schools and high schools that have friendship groups as a regular part of their curriculum are usually the best schools, and if yours currently doesn’t, it would be a great idea to help get some started. Often the typical peers in the group will help the child on the spectrum learn targeted social skills and will provide suggestions on areas that still need intervention. I have seen many of these cliques include the child on the spectrum in activities such as sports events, parties, and other pursuits outside of the arranged friendship group, which is usually held at lunchtime.

  I have also had parents report mixed feelings about social-skills groups that include only kids on the spectrum. On the one hand, some parents report that the group has provided their children with friends whom they can call and sometimes hang out with. On the other hand, some parents have reported that their child has begun to hang out with children who have more or different social challenges and this has caused a problem when their child imitates other inappropriate social behaviors. Another problem is that typical children may not want to hang out with children in the social-skills group. So those are things to keep in mind. I prefer social and friendship groups with typical peers, and this can be written into your child’s middle or high school Individualized Education Program (IEP).

  My daughter has one really close friend, a girl who’s very similar to her. They get left out of pretty much every social event, but as far as I can tell, they’re fine with that, since they have each other. Can I relax and just leave them to each other? Or should I worry that they don’t have more friends?

  No one fully understands how friendships work, but we do know that different things work for different people. I usually worry—a lot—when one of the kids I work with has no friends. In fact, one of the most frequent reasons parents call me is because their children are spending all of their free time alone. So I would say that having any friend at all is great. But what you may want to think about is what happens if that friend is sick, moves, or just decides she doesn’t want to hang out anymore. Has your child developed the skills she needs to make new friends? To converse appropriately with new people? To get along with other kids? To engage in activities the other kids are engaging in? If you answer those questions with yes, then it’s great that your daughter has a best friend. If you answer no, then I wouldn’t relax. I would make arrangements for her to get intervention for helping her develop better socially.