Growing Up on the Spectrum

by Lynn Kern Koegel

  The good news from Robert was that while kids on the spectrum might take longer to master driving than typical kids, they tend to be much safer drivers in the long run. Their meticulous rule following and general rigidity turn out to be positive traits when it comes to driving. He said these kids rarely fool around or speed or take stupid chances on the road. So as long as we were willing to take a long-term view, we could be hopeful Andrew would one day be a safe and skilled driver—it just wasn’t going to happen overnight (so little does, have you noticed?).

  Thus began many months of Andrew’s on-the-road training. And he learned. Slowly but steadily.

  Half a year later, when we felt our savings account had been adequately depleted by the cost of the driving lessons, we scheduled the road test. I hadn’t learned to drive until I came to LA as a young adult, and managed to fail my first driver’s license test just a few miles from where we live now. I knew how devastated Andrew would be if that happened to him, but I also knew the odds of passing the first time around weren’t good—tons of kids fail their first test.

  Long story short: Andrew passed on that very first try.

  He’s been driving himself around since then, which has improved my life tremendously. (His too, I hope.) Driving doesn’t seem to stress him out the way it does me, which is terrific. He has a respectful, realistic attitude about it—he recognizes that being able to drive is one more step toward independence and that driving gets you where you need to go. I hope my other kids are as cautious and as willing to work hard on their skills as he is.

  Frequently Asked Questions

  On the one hand, my son wants to help out around the house and that’s great. On the other, he doesn’t listen carefully enough to all my instructions so usually makes some kind of mistake that makes me wish I hadn’t asked him in the first place. How do I get him to follow instructions better?

  First you’ll need to figure out if he can accomplish the task but just isn’t listening, or if he really isn’t able to perform the task. If he just doesn’t listen, have him repeat the instructions before he starts, and make a list for him to follow or give him shorter instructions. If he isn’t proficient at the task, you’ll need to break down the behaviors into smaller steps and figure out which steps he can complete and which he can’t. Then gradually add on the more difficult steps.

  My daughter spaces out so much that I think she’d walk out of the house naked, unfed, and backpackless every morning if I didn’t constantly remind her to get ready for school. I’d like to get her less reliant on me—especially since she’ll be going to college in a couple of years. I think she basically waits to do anything until I start losing my temper. Any suggestions for getting her more motivated on her own?

  If she’s college bound, her communication and academics are probably pretty good, so you may want to start her on some self-management. And don’t forget to reward her for little steps. Don’t wait until you lose your temper to get her into action. That just won’t work in the long run. Finally, try to see if she’s avoiding anything—that is, using these behaviors to get out of doing something she doesn’t like. If she hates first period, for example, she may consciously or unconsciously be engaging in these behaviors as a way of avoiding. Making sure that there is something motivating at school when she arrives may make a difference in her spaciness in the mornings. This can be anything she enjoys, like visiting a favorite teacher, watching a favorite video, getting a special treat to eat, or anything else you can think of that will give her pleasure.

  My daughter has this little piece of fabric she keeps in her pocket and rubs and pulls at when she gets upset. Most of the time no one sees, but when something really upsets her, she pulls it out and starts playing with it. It would be fine if she were four years old, but she’s fifteen! If I tell her to leave it at home, she gets incredibly agitated. Should I just let her have it? Kids have teased her about it in the past and probably will again.

  This might be a good time to teach some replacement behaviors. If something is upsetting her, and it’s reasonable, she may need to learn how to express herself to deal with the problem more directly. However, if it’s something she shouldn’t be upset about, you may want to consider teaching her some self-management procedures.

  My son is now able to drive himself around town, which is great—except that I’m terrified that someday he’ll be pulled over by a policeman for some violation or another (it happens to everyone at some point) and that he’ll say and do the wrong things, and the policeman, not knowing he has autism, will think he’s being rude or is on drugs or something like that. How can I prepare him for something like this so he acts appropriately and doesn’t make a stressful situation much, much worse?

  A few months ago I got a call from a mom whose child I had diagnosed with Asperger’s syndrome many years ago while he was in high school. He had been driving and, like many teens, was speeding. Unfortunately, the red lights and siren started up behind him. He panicked, and instead of pulling over and stopping, he started to drive faster. He didn’t pull over until several miles later, by which point a number of other police cars were also following him. Then, to make matters worse, he began arguing with the policemen. Well, that landed him in jail.

  As a result of a series of letters I wrote, and the testimony of others explaining that kids on the spectrum may not fully understand the gravity of the situation, he got off with a relatively light sentence.

  In retrospect, he felt bad about the whole incident, but I truly believe that at the moment when the siren started, and during the minutes afterward, he didn’t fully understand that what he was doing was problematic.

  There are a few things you can do to make sure that your child doesn’t have a similar experience. First you’ll need to prime him. Teach him how to interact with people during the unfortunate situation of inadvertently breaking the law. Help him understand that many people get pulled over and get tickets, and while we aren’t happy about it, the goal is to keep people safe.

  The other important area to target is the police. Many organizations have begun to train law enforcement officers in the symptoms of autism spectrum disorders. Police officers are often called when a child runs away. In fact, a police officer found an adolescent in our area by the side of the highway engaging in repetitive behaviors and handcuffed and arrested him—very unnecessary but the policeman thought the child had taken drugs and didn’t understand that it was a communication delay. Police officers need to be taught how to engage with individuals on the spectrum.

  It would also be helpful to have something on your child’s driver’s license to indicate he has a disability. This could simply be a note asking the officer to call a parent in case of any problems, or even a sticker that explains that your child has autism. Your child would have to be comfortable with having something like that on his license, and its usefulness would ultimately depend on how receptive any individual officer is.

  Finally, you may want to make a visit to your local police department, introduce your child, and have someone talk to your child one-on-one about the whole ticketing process. People on the spectrum are often excessively honest, and that may not go over well with a cop, so they should have some sense of how they need to be respectful and polite in a ticketing situation.

  4. Managing Modern Technology

  My son spends hours each day in front of the computer. I check now and then to see what he’s doing there and it’s nothing alarming—mostly games, no porn sites or anything like that—but when I encourage him to call a kid from school to come over or go somewhere, he always makes up an excuse and ends up right back at the computer table. I don’t want him to live his life virtually but I can see how relaxed he is at the computer and how tense he gets when he’s in a social situation. How can I deny him something that makes life so much easier for him (and for me too)?

  CLAIRE

  It feels as if we’re constantly fighting the technobattle. We’re forever coming up with new ru
les to limit how much time all our kids spend at the computer—that is, when Rob and I can tear ourselves away from our own computers long enough to talk to the kids about how they need to spend less time on theirs.

  Of course, when Rob and I are on our laptops, we’re working.

  Except when we’re not.

  Time has a way of blurring when you’re on the computer, and tasks get strung out into something else entirely—for both kids and adults. Homework turns into YouTube viewing, an instant message or chat about a class project (acceptable) turns into an exchange about annoying teachers (not acceptable), research gets detoured by an interesting tangent (I’ve always wondered how they got those ships in those bottles … ). All of my kids spend too much time on the computer. I spend too much time on the computer.

  Still, there’s a noticeable difference between Andrew and our other kids when it comes to electronics. They all feel the draw of the computer—no question about that—but our younger kids also feel a draw toward a lot of other things, like reading and playing games and doing art projects. If Andrew is home and doesn’t have anything scheduled, he’s at his computer. Nothing else engages him so entirely.

  An even bigger difference shows up when we’re all out in the world. The rest of the kids leave technology at home. If we’re visiting friends or new places, they’re running around, exploring, talking to people, buying things, whatever. But if Andrew’s not home, and there isn’t a specific, scheduled activity, then he’s probably sitting in some corner playing with his cell phone or iPod touch (which allows him Internet access anywhere there’s Wi-Fi). If we tell him to stop, he will, but his default activity is always to retreat into staring at the small screen. I don’t know why—it’s easier, I guess, and predictable, and some of the things that enchant the rest of the family, like wildlife and scenery and meeting new people, just don’t appeal to him in the same way.

  The Web sites that Andrew gravitates toward aren’t bad ones. He loves theme parks and constantly checks on the progress of any new rides that are being built. He likes to go to IMDb and glean information about famous people (information he retains like no one else could—he knows the age and birth year of virtually every celebrity). He works on his own Web pages and has even been known to create Wikipedia pages for members of his family (check out mine—it only exists thanks to him). Lately he’s been teaching himself flash animation. So it’s all pretty innocent and arguably even productive.

  I have no objections to what he’s doing online—just to how much time he spends doing it. He likes getting together with friends, but it’s easier to stay at home and play on the computer, and that’s what wins out most of the time. I’d like to see him find other more active and social things to do with his free time.

  DR. KOEGEL

  For better (mostly) or worse, our kids have grown up with technology that seems to expand exponentially each year. Kids communicate through instant messages, text messages, e-mail, and social networking sites. They play competitive games on the Internet, create blogs, and voice their opinions in chat rooms. This can be a good thing, even a great thing, but it also has negatives.

  The trend of increasing accessibility of information is great if you just want a little education on some esoteric subject, but it comes with obvious risks, because the source may not be as reliable as we think.

  I recently read in a medical training journal that the Internet is changing the way doctors practice medicine. That’s because patients now look up their symptoms on the Internet and arrive at their doctor’s with a fair amount of information, unlike the old days when they waited for their doctors to provide all the answers. The article discussed how doctors now have to be trained to engage in a detailed discussion about a patient’s illness and potential therapies and outcomes rather than just unilaterally decide on a course of action. The truth is that while the greater knowledge patients have access to is usually a good thing—it means they’re better informed and more likely to ask important questions at a doctor’s appointment—it can also cause huge problems if people misdiagnose themselves or skip going to the doctor when they really need to. So here is our electronic age in a nutshell: so much out there is good—but only if it’s used wisely.

  New and popular technologies allow people to maintain friendships they might not have continued otherwise. My kids have kept in touch with a whole bunch of elementary, middle, and high school acquaintances through social networking sites. In fact, kids are so tech savvy these days that they could easily go through life without much real conversation. They can text friends and family to make plans, buy everything from groceries to clothes to movies on the Internet, and get any information they want by Googling it. They can also entertain themselves endlessly with competitive games and chat rooms dedicated to their specific area of interest.

  The Bad News

  A lot of this is good, but for many kids on the spectrum, it’s so much easier to interact through the Internet or via text messaging than it is to socialize with people face-to-face that they stop being willing to do the latter. And that’s a problem. Their skill and comfort with technology can act as an opening into greater social interactions (for example, cybercamps or clubs), but if your child is using technology to withdraw, be unrealistic about what is really happening, or simply to replace almost every other activity, you’ll need to intervene.

  Other problems can arise when there are strangers involved. About a third of teens report that they’ve been contacted by uninvited strangers over the Internet, and if your child is gullible, there’s a really scary possibility she might agree to meet in person someone she thinks she “knows” but doesn’t really.

  Another big problem is cyberbullying. Mean kids spread rumors about other kids, personal and private text messages are forwarded to prying eyes, and embarrassing pictures have been known to pop up for the public to view.

  The Steps You Need to Take to Deal with the Internet in Your Home

  As you’ll see from the case studies later in the chapter, you really don’t want to leave things to chance when it comes to your child and how he uses the Internet. The risks are real and if you wait until there’s a problem, you could have too big a problem to handle after the fact. You need to stay on top of the situation from the very beginning. Here are the steps I recommend you follow to do so:

  • First, decide if it’s helpful. All the parents I know have mixed feelings about video games, but they can provide an opportunity for socialization. (This is much truer for boys than girls.) Obviously, you don’t want your kid sitting at home alone all day playing, but many of the games can be played with others, turning them into a social experience. Also, many cities have video arcades where middle and high schoolers hang out. Kids can have a lot of fun playing well-supervised video games (please don’t get the ones with too much violence), and again, it gives them something to do and talk about. I’ve known parents who, after listening in on the conversation in the lunchroom, have gone out and bought the popular computer or video game that all the boys were talking about and then taught their child on the spectrum to play it, just to give him an entrée into the conversation.

  • Make rules. Have clear, specific household rules, including a limit to the time spent on the computer. Figure out what an appropriate amount of time is for your child to spend on the computer (it can be a daily or weekly number and you can check around with friends and experts to see what most kids are doing) and then make it clear that the computer will be turned off after that. Also be specific about what your child is and isn’t allowed to do while on the computer. In many households, kids aren’t allowed to use the computer for anything other than homework until all homework is done. Other families allow games and recreational use only on the weekends. Figure out what you’re comfortable with and then set those rules for your family. Post them somewhere near the computer so your child can always check them.

  • Monitor. The only way you’re going to know if your child is following your rules is i
f you check on him. There are different ways to do that. Some families keep the computer in a public area so they can see when their kids are online and what they’re looking at. Others install programs on the parents’ computers that show them what their kids are doing online at any given moment. Some families have a rule that Mom and Dad can check the computer’s online history whenever they choose to see what sites their kids were on and how long they were there. Whatever method you choose, it’s vital that you be honest with your child that he’s being monitored and in what way. You don’t want him to feel spied on—you want the monitoring to be an open and natural understanding, part of the “Going online is a privilege, not a right” contract.

  • Step in if there’s a problem. It may be that no matter how hard you try to keep your child’s computer time restricted, she won’t be able to stay away from it. Or maybe she’s figured out how to hide the Web sites she’s visiting from you (and because our kids are more computer savvy than we are, she can probably do it). Don’t just ignore the early warning signs—take action before a potential problem spirals out of control.

  • Analyze the situation. As always in a situation where there’s a behavioral issue, you need to do a functional analysis to figure out why your child is doing what he’s doing. Only by understanding the underlying motivation or reinforcement can you counter it with appropriate alternative activities. So, for example, if your child keeps going back to the computer despite your attempts to make him cut back on his time, you need to stop and think about why he’s doing it. For many of our kids, the cause is fairly simple to figure out: it’s easier to be social and make friends online than in person. If your teenager is actively seeking out porn, then you need to think about his changing hormonal needs and how to address them. (See Section III, Chapter 3 for more information on helping your physically maturing child.)