Growing Up on the Spectrum

by Lynn Kern Koegel

  As we’re reviewing the clips, we try to have the client supply good ideas for any missed opportunities. For example, if we were working on asking more questions, we might first show him a clip where he successfully asked someone an interesting question, and follow that with one with a long painful silence. We’d say, for example, “In this clip, there was a bit of a silence. Since Josh just said he likes Italian food, a good question might have been ‘Do you have any favorite Italian restaurants?’ or ‘What kind of Italian food do you like?’ ” Then we’d ask our client if he can think of any good questions he could have asked the other person, so he gets a chance to develop some questions on his own, which is the skill we’re aiming for. We keep practicing and monitoring how well he does during these practice sessions until his behavior improves to the point where the video-modeling sessions are entirely examples of positive behaviors.

  Now remember, kids with autism sometimes “generalize” (transfer learned knowledge in one situation to other situations where they weren’t specifically taught or practiced), and sometimes they don’t. If your child is doing great during the video-modeling sessions but you’re not seeing any improvement outside of the sessions, you’ll want to use some other approaches to help bring the positive experience into other environments (you can’t follow your kid around with a TV monitor and video camera all day long!). Self-management works well to get the behavior out there in everyday settings (see below for more on that). Other reinforcement systems, such as rewarding good behaviors with points or tokens, also can be helpful.

  Self-Management

  Self-management—learning to monitor one’s own behavior in a systematic manner—works beautifully for adolescents and young adults on the spectrum.

  Just to give you a little background, some of the first studies on self-management were conducted on college campuses back when students could smoke in class. Researchers were doing studies on how to cut back on smoking, so for a pretreatment baseline they decided to have the students count the cigarettes they smoked during class. It turned out that when they simply counted the cigarettes they were smoking, they started smoking fewer of them. Without any intervention! This was dubbed the reactive effect: simply being aware of your own behavior and monitoring it can make you change it. It’s sort of like writing down everything you eat when you want to lose weight or keeping track of those glasses of chardonnay at a party so you don’t drink too much.

  We’ve done a lot of research on self-management at UCSB. I did my initial work on self-management when I worked as a speech-language pathologist in public schools. There was one group of children who couldn’t say a sound or two, usually s or r. I only saw the kids two or three times a week for twenty minutes, so they never got enough practice on their sounds. Some of them had been working on the same sound in speech therapy for three or four years. We found that if we provided the little wrist counters that golfers use and had the children keep track of the number of times they used those sounds away from their sessions, they showed incredibly rapid improvement. It really made a difference when they could monitor themselves on an ongoing basis—the kids basically became a crucial part of their own intervention.

  Since then, we’ve set up hundreds of self-management programs for children, adolescents, and adults on the spectrum. It’s a great way to get intervention without an interventionist being present. And by making the participants more aware of their own behavior, we increase their ability to control it. Below are the general steps for setting up a self-management program:

  1. Pick a target behavior. First you’ll need to decide on a target behavior. It can be one behavior, such as appropriately greeting people, or a group of behaviors, such as sitting and facing another person, looking her in the eyes, and responding to her questions. Once you’ve decided what you want to work on, you’ll need to decide if it’s best to monitor time intervals or instances when the behavior happens. Behavior is sometimes easier to monitor by time intervals: I once set up a self-management program for my husband for not arguing at faculty meetings and he tallied each fifteen-minute interval of time with no arguing! If the target behavior is a distinct interval, like every time she greets another person, a wrist counter (golf counters work great) can be used to count each occurrence of the desired behavior.

  2. Take a baseline. The next thing you need to do is determine how often the behavior happens (or doesn’t happen). For example, if you’re thinking you want to get your child to answer questions people ask him, you’ll first need to measure how often he responds now, so you can get a baseline that will allow you to monitor improvement. If you’re measuring how long he sits and engages in a good conversation, you’ll want to have a watch with a second hand so you can note the time intervals. Getting a good idea of how often the behaviors are already happening is important because we always want to start the self-management on a small enough interval or with a small enough number of the desired behaviors so the child or adult will feel successful.

  3. Prepare. Before you start the intervention, you’ll need to create or purchase a recording device: anything from a sheet of paper with boxes for each interval to a stopwatch to a wrist counter (see number 5, “Record successes,” on the next page for more information). Figure out what type of reward your child will be willing to work for—this can range from some free time to movie tickets to video games. I know some people don’t like the idea of giving rewards, but think of it as a paycheck—there aren’t too many people who would be willing to go to work every day if they didn’t get a paycheck at the end of the week. And your child will be working hard.

  4. Teach discrimination. Before you can ask your child to start monitoring her own behaviors, you have to make sure that she understands what she’s supposed to monitor and can discriminate between it and what she isn’t supposed to do. Remember, we always focus on the positive. So if your child doesn’t respond to other people’s questions, you’ll want her to monitor when she does respond to someone. Similarly, if she has trouble starting a conversation, have her monitor each time she successfully does so. If she’s monitoring time intervals without engaging in an undesired behavior, like repetitive behaviors (or time intervals of engaging in appropriate behaviors that are incompatible with the repetitive behavior), you can use a watch with a chronographic alarming function or a timer. Don’t have her keep track of her failures, just her successes. Focusing on the positive and rewarding success will give your child confidence and a real desire to engage in the appropriate behaviors.

  5. Record successes. Now that your child understands what the desired behavior is, you can prompt him to evaluate himself. You’ll probably need to prompt just in the beginning—over time he’ll learn to self-evaluate without the prompts. Each time he engages in the desired behavior, or sustains the determined interval with the desired behaviors, he’ll need to record that success. Recording can be accomplished in lots of different ways. You can get a little wrist counter (like a golf counter) from a sports store. Or you can just draw a grid on a piece of paper. If you’re recording intervals, such as periods of time without an undesired behavior, you’ll need to use a timer or a chronographic alarm watch with a repeat countdown function and a book or sheet of paper to record the successful intervals.

  6. Reward. As much as we would like our kids to engage in the desired behaviors purely to help themselves, you will probably need to establish rewards for your child. Give her a menu of choices to select from. Of course, you’ll want to pair the rewards with lots of heartfelt and enthusiastic praise.

  7. Fade back. Eventually you’re going to want the self-management system to fade. You can encourage this by increasing the number of points or the time increment your child needs to earn the reward. If you do this gradually and systematically, he’ll be on the road to independence.

  Think about it: self-management is something just about everyone uses. When we were around nine or ten years old, teachers started instructing us to write down assignments and follow u
p by checking them off. That’s self-management. When we were in middle or high school, we started using calendars to help keep our lives organized and prevent us from forgetting important meetings or appointments. When we went out on our own, we kept track of more things, such as shopping and to-do and holiday card lists. We keep lists of birthday gifts, then check them off after we write thank-you notes. Basically, we self-manage all the time. Our self-management systems have become so automatic that we don’t need to formally keep track of them anymore—which is what we want for the kids we work with. Most of our kids need the formal programs set up, with some practice to begin with, but once they get going, they can manage themselves, thereby essentially serving as their own “clinicians.”

  ANDREW

  When I was about eleven or twelve, my therapist taught me a technique called self-management. Self-management is a tool that I sometimes use to help me realize when I am doing repetitive behaviors that I want to stop. I have used self-management to help stop talking to myself out loud, biting my fingers, and speech-ticking (using the same word over again in sentences without noticing), which I used to do a lot but I sometimes still do nowadays. What I do for my self-management is that whenever I catch myself doing something that I want to not do too much in the future, I write a check mark down on a piece of paper to remind myself of when I did it. I do that each time I do a repetitive behavior and count all of the check marks I wrote down during that certain time period. If I do a good job with it, I give myself a reward, but if I do not, I just try again until I can stop doing that certain behavior so many times. I mainly use self-management when I feel upset about doing a certain behavior too many times and really feel the urge to stop doing it.

  Self-management is useful in many ways. The main reason it helps is because it helps you notice when you are doing a repetitive behavior, especially if you did not know that you were doing it before. The more you notice your behavior, the more it will help you stop doing it. Also, the more you do self-management, the happier you will feel. You will feel much happier not doing those repetitive behaviors.

  I also use self-management to keep track of things that I need or want to do, like to finish homework in time, to make sure I exercise, to make sure I call somebody, or to make sure I give something to someone. Self-management is not just putting check marks down on a piece of paper; it can also be as simple as writing down one thing that I need to do or even just writing a few things I need to do on my notepad on my iPod touch.

  DR. KOEGEL

  It’s interesting to note that Andrew counts the behaviors he wants to get rid of—when we set up a program, we generally don’t ask people to monitor the undesired behaviors. We try to keep it positive by rewarding periods of time or instances with the desired behavior. However, I have known people like Andrew who keep track of the negative behaviors, and as we said earlier, the first documented self-management programs involved counting cigarettes smoked (a negative behavior), and it did successfully decrease smoking. So again, simply being aware of the undesired behavior, and monitoring when it happens, should also be helpful in making a change.

  Functional Analysis

  Functional analysis has become popular in the area of positive behavioral support, and we’re all glad it has. Previously, people used to punish challenging behavior, not knowing how else to stop it. Often the child learned not to show the problem behavior with the person who punished her, but would revert to it around anyone else. Functional analysis involves figuring out why a behavior is occurring, and developing and teaching an appropriate replacement behavior that serves the same function. The main goal of a functional analysis is to replace a problem or inappropriate behavior with one that is socially acceptable.

  Functional analysis came out of research showing that almost all behaviors have a reason. One of the most common reasons for problem behaviors is when students are trying to get out of or avoid an assignment or task they don’t like (I remember my sister used to conveniently have to go to the bathroom whenever it was time to clean off the table and do the dishes). Another common function of inappropriate behaviors for kids on the spectrum is to try to get out of a situation that’s unpleasant or uncomfortable. I have seen many kids on the spectrum actually start engaging in behaviors they know are inappropriate just because they want to escape the situation. For example, we worked with one adolescent who was moderately social, but when he got tired of interacting, he would start talking about blood and gore, which immediately terminated almost any social situation.

  Finally, as we’ve developed motivational teaching procedures, we’ve noticed that more kids enjoy socially interacting because we set up the situations so that they’re reinforcing and meaningful. Along with that comes a desire to get attention, and if a kid on the spectrum doesn’t know appropriate ways to get attention, he may engage in behaviors that get attention but aren’t socially acceptable. These can vary from repeatedly calling someone to following someone around to behaving aggressively. So if a child is engaging in escape, avoidance, or attention-seeking behaviors, you’ll need to make sure she learns and uses replacement behaviors.

  Desensitization

  You may have heard of desensitization programs for getting rid of phobias, anxiety, or aversions. A phobia can really disrupt someone’s life, especially if it makes him avoid certain situations. We’ve all heard of people who absolutely can’t get on planes or leave home to do something social.

  With many people, the entire desensitization can be completed in the office by teaching them how to relax, a physical response that is incompatible with anxiety. We do this through imagery. Once a person can voluntarily relax, we very gradually and systematically work our way up a hierarchy of least anxiety-producing situations to most anxiety-producing situations, working on relaxing in each one.

  For example, early in a friend’s medical career, she was shadowing a neurologist at a hospital. A young female patient, about my friend’s age, was undergoing a procedure that required a large needle to be inserted into her brain. During the procedure, my friend began to feel dizzy and the next thing she knew, she had fainted. The doctor assured her that first-year medical students “drop like flies,” but that didn’t help her anxiety. In fact, she briefly wondered if medicine had been the right career choice for her and she avoided the hospital for weeks. We were able to overcome this problem using desensitization. We developed a hierarchy involving steps that started with lying on a beach in Hawaii or shopping at a mall and ended with watching someone have surgery or someone else have a needle poked into her brain. Of course, there were dozens of steps in between those extremes. Throughout the process, she worked on relaxing—a response that was incompatible with her anxiety. After just a few sessions, she had mastered the self-relaxation techniques to replace the anxiety and was able to go back to the hospital without that dizzy feeling.

  Well, that’s the general idea, and the procedure works well with individuals on the spectrum. For kids who have less communication, we’ve been able to use a variation of the procedure by having the child move closer and closer to the item or activity that causes anxiety while engaging in a fun activity. For example, I’ve worked with many kids who screamed bloody murder when they were having a haircut. Sometimes it can get so bad that the mere sight of a pair of scissors throws them into an utter panic. But we can desensitize them to the scissors by having them play a game or eat a favorite snack while we move the scissors closer and closer until they’re right in front of the child; then we open and close the scissors, and then we move them closer and closer to the child’s head, and so on.

  We have also effectively used desensitization with children who had sound sensitivities and other types of fears, so if your child has any type of fear, or is overly sensitive, you may want to consult a psychologist and consider desensitization.

  One last note—if you’re considering desensitization for someone who’s lacking a skill and feeling anxiety, it’s best to teach the missing skill fir
st. For example, if your child has anxiety about dating, and he has successfully learned the incompatible response of relaxation but then goes on a date that’s a disaster, you may well be right back where you started. So it’s best to use the technique for behaviors that are specific and not caused by general skill deficits. Those need to be addressed with interventions that teach the skills.

  Finally, desensitization works at different rates, and it doesn’t seem to be related to how long the person has had the anxiety or how intense it is. Just be patient and keep moving through those steps, gradually and systematically, and if your child starts to demonstrate some mild anxiety as you’re moving up the hierarchy, move back and add a few more steps.

  Peer Recruiting

  Peer recruiting is essentially calling on your child’s peers to work with you and the teachers to help support your child’s efforts out in the real world. As we mentioned in a previous section on modeling, peers play a crucial role in showing your child (and you) how kids her age are communicating and socializing. Classmates can be an invaluable source for helping your child navigate through the most difficult part of the school day (usually free periods, like recess or lunch) and can be called on to provide company if your child is being isolated. But it’s important to approach them in a methodical, thoughtful way, as outlined below.

  If your child knows that he’s on the spectrum or if he has some behaviors that make it clear to his peers that something isn’t right, and if you or he feels that the kids aren’t being nice to him, a classwide chat about autism might be very helpful. For parents of middle and high schoolers, we recommend first asking the school administration to allow you to address the students in your child’s class and then following the steps outlined below. Children can also be approached in smaller groups, but a classwide discussion is something we’ve orchestrated fairly often with good results. Generally, this session is conducted without the child on the spectrum attending. Below is a suggestion for how to organize this approach: