Growing Up on the Spectrum

by Lynn Kern Koegel

  When my daughter gets home from school, she goes right to the computer and starts playing games. I try to get her to stop and either go outside or do her homework first, but she insists she needs the decompression. Is there anything wrong with letting her play on the computer for an hour or so before doing anything else? It genuinely seems to relax her.

  Some potential problems with her dashing to her computer every day after school are (1) she may be doing this instead of spending time with other kids her age; and (2) she may never get around to her homework. We all know that the computer can suck you in and provide endless hours of entertainment. If she’s doing this at the expense of socializing with kids her age and learning from her peers, I would pull the plug. Or if she’s never getting around to her homework because, heck, it’s just a lot more fun, then I would only let her use the computer when she finishes her homework.

  A kid who claims to be a friend of a friend starting instant messaging my daughter. She said the new girl was really nice but I was a little worried when I looked at the IMs because I felt that the girl was trying to lead her into saying negative things about other kids and expose some embarrassing truths about herself. It might just be friendly, but I’m uneasy about it. How should I handle this?

  Kids can be mean to one another, and adolescents can adjust their own stories slightly to make themselves more appealing to their peers. If you have discussed the rules and the potential negative consequences, hopefully your daughter will steer clear of potential problems by simply not saying anything negative. If it is a hoax, the other kid will eventually give up if your daughter doesn’t make the mistake of saying anything potentially harmful or embarrassing. But remember, kids have to be constantly reminded of the rules. Not in a nagging and irritating way, but in a mature, adult way. Growing up is also a time of learning and experience, and they all will fail here and there as they learn for themselves about complex social interactions.

  5. Improving Coexisting (aka Comorbid) Conditions

  Whenever my daughter sits down to work at her desk, she has to make everything line up perfectly—laptop, papers, lamp, and so on. She reminds me of that detective with OCD on TV. Do you think she could have OCD? That would be pretty unfair when she already has autism!

  CLAIRE

  Andrew worries a lot about germs (see what he had to say about personal hygiene earlier in this section if you don’t believe me). He didn’t get that from me—I have to be the most relaxed mother in the world about that stuff. The other kids and I are always sharing glasses and food (and, inevitably, viruses), and I don’t make them wash their hands nearly as often as they should. So the germophobia is unique to Andrew, who adamantly refuses to drink or eat out of anything someone else has used.

  He’s very concerned about washing his hands every time he sneezes. Unfortunately, the poor guy has mild allergies and sneezes fairly frequently. He had one disastrous outing to the Third Street Promenade, where public bathrooms are in short supply and where he wound up dragging his friend up and down the street for half an hour looking for one because he had sneezed once. I’ve since encouraged him to carry a small bottle of Purell when he goes out, so he can sanitize his hands without needing to find a bathroom. This has helped—a little bit. He still prefers to wash his hands if he sneezes (which is admirable) but he doesn’t feel it as a burning need the way he used to. Or maybe he’s just learned to postpone the washing until there’s a convenient way to do it (when we’re out, he still tends to rush off to any available public restroom to wash his hands). But this habit, and several others, make me wonder if he could fall on the OCD spectrum in addition to that other spectrum we’ve been talking about.

  DR. KOEGEL

  Unfortunately, many older kids and adults with autism develop other conditions that are in some way related to the autism. These may develop because some of the characteristics of autism can lead to different but related challenges. For instance, repetitive and restricted interests might lead a teenager to hoard everything related to that particular interest (say, train schedules, if he likes to read them). Lack of socialization might lead a young adult on the spectrum to develop habits or behaviors that would have been socialized away by a group of peers. An adolescent on the spectrum might develop some feelings of depression as she improves and realizes that she doesn’t have many friends.

  If you’ve noticed that your child has any of the symptoms described on the following pages, you’ll want to be active in intervening, just as you have been throughout her life. Seek out a specialist in the area of autism who understands how to use applied behavior analysis and can teach pivotal responses to help with these extra challenges that sometimes appear in adolescents and adults on the spectrum.

  Here are some conditions that frequently arise in conjunction with autism and suggestions on how to work with and hopefully improve them:

  Hoarding

  I’m not sure whether hoarding stems from the strong desire for the preservation of sameness that many people on the spectrum feel (see page 360 for more on that) or from a desire to own everything related to a favorite restricted area of interest (as we mentioned earlier) or from something else entirely, but a subgroup of adolescents and adults on the spectrum hoard things. Some hoarded objects are common, like magazines or newspapers that they think they might want to read in the future, but sometimes they’re more unusual. I heard of one boy on the spectrum who even kept nails in a drawer—not nails construction workers use, but his own fingernails!

  If your child is showing a tendency to hoard, you’ll need to step in and make it a goal to start sorting through and discarding things. The best way to go about this approach is to help your child make a list of the hoarded items, organizing them into a hierarchy of things that are the most difficult to part with and those that are the easiest to part with. For example, he may insist that he’s not ready to get rid of his train magazines or toy model trains, but he’s sort of OK with discarding the weekly train club newsletters. So you’d start by getting rid of those first. As your child is successful, gradually work up the list. I’ve also done the two-for-one technique, where each time a new item is purchased, my client has to get rid of two less desired but hoarded items. If your child is reluctant to get rid of anything, you may need some kind of positive reinforcement (“We’ll go on that special outing if you throw out those papers”) or self-management system (“Give yourself a star every time you toss a magazine, and when you have ten stars, we’ll go out to dinner”) to get him to actually dump the stuff. (See Section I, Chapter 2 for more information on self-management.)

  “Obsessive Compulsiveness”

  We all use the terms obsessive or OCD in loose, sometimes joking ways to refer to our own or our family’s rituals, habits, or interests. I often joke about my husband’s being “obsessed” with sports cars. But OCD is a very real psychiatric anxiety disorder that can be debilitating to people. It generally involves distressing and intrusive thoughts and related compulsions that serve as an attempt to neutralize these thoughts, for example, “The house will burn down if I don’t check the stove repeatedly to make sure it’s off.”

  We all know people who worry about germs, but it’s a serious problem when it gets to the point where these fears significantly interfere with a person’s normal routine. We had a college student (not on the spectrum) who was so worried about germs that she scrubbed her apartment so often her hands were constantly bloody.

  When it comes to kids on the spectrum, some people believe that although their behaviors look like OCD, they actually aren’t, because they don’t have the obsessive thoughts, just the compulsive behaviors. I have talked with many people on the spectrum who will say that they repeatedly count their money, work out formulas, or line up things in perfect order just because they like it that way and it gives them pleasure. While some appear to be bothered if these activities are interrupted, many report that there is no anxiety involved—that is, they don’t experience any anxiety or distress r
elated to these behaviors. So there is a theory that these behaviors are remnants or symptoms of restricted interests or ritualistic behaviors (like self-stimulatory behaviors) that we see so often in children on the spectrum and not actual obsessive-compulsive behaviors that we would see in other patients with psychiatric disorders.

  We once did a study that utilized the intense interests of kids with autism to create group games and activities, to help improve social interactions. When we submitted the article, it was titled “Using the Obsessions of Children with Autism to Improve Peer Socialization.” Well, I have to tell you that the reviewers raked us over the coals for using the word obsessions! We had to change “Obsessions” to “Repetitive Ritualistic Interests.” It was an educational experience, and I realized how easy it is to casually reference anxiety disorders that are extremely complex and serious. And that’s why we put it in quotes at the top of this section.

  Regardless of the underlying reason for these types of behaviors, they generally interfere with a person’s life and therefore require intervention, and a number of different strategies have worked to reduce them. The first is simply providing rewards when your child doesn’t engage in the behavior. (If he’s an adult, he could self-reward.) For example, I worked with one young man on the spectrum who repeatedly drove in circles around the block after leaving his home. He reported no anxiety associated with this activity and simply stated that he enjoyed it. However, he was often late to events, meetings, and appointments as a result of driving around the block too many times. We developed a reward system and created a little chart for him to fill out: he gave himself a check every time he left his home without driving around the block, and when he completed the chart, he treated himself to one of the rewards. This was successful in breaking a habit that had continued for many months.

  Self-management is a great strategy for reducing repetitive behaviors. We often set up situations in which the opportunity for the repetitive behavior is present, then have the person evaluate how well she avoided engaging in it (remember to keep it positive).

  We have also had success with incompatible behaviors. For example, we’re currently working with a boy who’s very bright and constantly solves math problems. He’ll solve a series of progressively more difficult equations in his head, along the lines of 2 × 2 = 4, 4 × 4 = 8, 8 × 8 = 64, 64 × 64 = 4,096 (I had to do that last one on my calculator), but he can—and will—go into the multimillions. The problem was that he used to get upset if someone tried to stop him from finishing his calculations once he’d begun. Our intervention was to bring him to new places and redirect him to talk about activities and items in the new environment while ignoring the repetitive math problems. We pretty much bombarded him with comments, questions, and games (“Watch me, I’m going to walk backward—tell me if I’m going to bump into anything,” “Oh, look, there’s a flock of birds flying overhead,” and so on), while totally ignoring anything having to do with math calculations. He has greatly decreased his math solving and is beginning to engage in improved social interactions. And we’ve done some parent education, so his parents are able to incorporate the procedures at home and have seen changes there too.

  Finally, in a case like Andrew’s, where he so strongly feels the need to wash his hands after sneezing, we can use a desensitization program if it starts to affect his daily life and get him used to waiting a longer time—until it’s convenient—to wash his hands. We would also need to teach him a replacement behavior because the delay alone probably wouldn’t eliminate his anxiety altogether.

  Preservation of Sameness

  Many kids on the spectrum are inflexible about certain things and have to have everything a certain way. For example, they might get upset if you take a different route to school, rearrange the furniture, or change the way their belongings are arranged. If your child is already having a problem with needing to have something in a certain order or a certain way, it may get out of hand as he gets older. This is okay if it doesn’t interfere with normal functioning, but occasionally it does.

  For example, I worked with one young adult who lived in her own apartment and didn’t want a single thing changed in it. Unfortunately, after a few years of neglect it really needed fixing but she was unwilling to make any changes. Just taking the first step into her front door, you could tell that not a thing had been changed in years. She also never got rid of anything—shoes, old bottles, magazines… . Her apartment was excessively cluttered. That wasn’t a problem per se, but the fact that she became irritated with anyone who suggested she clean or organize was a problem.

  I wanted to encourage her to fix up her apartment, but at first I couldn’t hit on a strong enough reinforcer that would be more important to her than just keeping things as they were. Then I realized that she was interested in dating. By promising to introduce her to eligible guys once her home was fixed up, we were able to persuade her to replace broken and outdated pieces of furniture. I will admit that this has been very difficult for her but little by little she has started to work on the apartment. At the same time, we gradually started getting her together with other young adults who have similar interests, and she has invited a few people to her place. She doesn’t have a boyfriend yet, but I’m confident that eventually she’ll meet the right person, and although she might not be viewed as the greatest housekeeper, her apartment is no longer a disaster.

  Depression

  As interventions have improved, we’re starting to see a large group of adolescents and young adults who succeed academically, get jobs, and even establish a career—but who just don’t have many friends. They tend to be a little quirky, mostly because they haven’t had enough social interaction throughout their lives and really never developed a group of friends or even one best friend. Feeling socially isolated, some become depressed. Unfortunately, depression is a vicious cycle: when they become depressed, they don’t make an effort to get out and do things, and so they fall deeper and deeper into the rut of social isolation.

  We have found it very helpful to provide supported community opportunities for depressed people on the spectrum. In other words, we find out what activities they like and gradually introduce them to these activities in a supported way so that they’ll experience success. For example, we enrolled one young adult who likes dancing in a ball-room dance class along with a therapist. No one else knows that the partner is a therapist, but her support allows him to meet other single people without having to do it all on his own. Another one of our clients goes to museum art shows every month with a cousin.

  Again, you need to get people on the spectrum who are experiencing depression into social settings where they’re likely to experience success. First, though, you need to do a functional analysis to try to figure out why that person is depressed. We’ve had people tell us about that spiraling downward cycle—where they aren’t making friends, so they spend more time alone, which makes them more depressed. If this vicious cycle can be addressed, life can get better, not worse. Finding the right therapists who will actually help your child get the skills he needs to be successful socially can make a difference.

  While depression may be related to variables other than social isolation, it has appeared to be socially related in just about all of the adolescents and adults on the spectrum whom I have met who are experiencing it. Some of our adults come in already taking antidepressants or other mood stabilizers, but we generally try to fade them quickly, because our goal is to teach the person those missing behaviors that are causing them to become socially isolated. In fact, we have had some adults come to us on so many medications that we don’t feel as if we know the real person.

  Medications may help some, but most of our clients express a desire to be chemical free and are eager to learn to remedy the social behaviors that are causing their isolation. If someone is missing key behaviors, the medications won’t miraculously teach them how to show self-control when dealing with a stressful situation or how to keep a nice back-and-forth co
nversation going. And until those behaviors are learned, the social isolation that’s causing the depression and/or anxiety is unlikely to improve.

  Anxiety

  Some individuals who experience repeated failures socially can begin to feel anxiety about socializing and may start to avoid any activities that might potentially involve socializing (which, of course, are most activities outside the home). As with depression, this creates a vicious cycle. The worst thing a person who is already having social anxiety can do is to shut himself out of all society.

  One successful approach we’ve used is to have our clients rate on a scale how comfortable they would feel in different social situations, using a large list of community activities as a reference. We generally like to focus on a positive comfort level rather than asking them how anxious they would feel, because we really want them to think about which situations are comfortable for them and not about the ones they want to avoid. We usually try to estimate the number of people who are likely to be in those settings (one person, a small group of people, a large group of people), the particular company they would like to have (going with a therapist or alone), and the specific setting (their home, a movie theater, a restaurant, and so on). If we start with the situations where they feel most comfortable, such as going to a movie with one person, or going to a sports event with a few people, then gradually and systematically work up to the situations where they feel less comfortable, they usually can experience success without anxiety and are more likely to want to continue these outings.