Growing Up on the Spectrum

by Lynn Kern Koegel

  Similarly, if they don’t have a super big peer group, grounding older kids on the spectrum as a punishment doesn’t work either. Most teenagers with autism are more than happy to stay safely at home.

  Another thing that doesn’t work with kids on the spectrum? The guilt trip. Most moms are great at that. Mine would say, “Is there anything you think you should be telling me?” (in that tone of voice that implies culpability). Um, what could she possibly have found out? But kids with autism don’t usually get too bothered by the guilt thing, maybe because they’re not as attuned to nuance of tone. Also, we’re working with some middle and high school kids on the spectrum right now who have trouble completing assignments, and they don’t seem to feel the same kind of anxiety about not getting them in that motivates most kids.

  So … we usually can’t use guilt, anxiety, or the desire to be included as a motivating force when working with kids with autism, which leaves us with the need to use a whole other bag of tricks. Some can be applied to a variety of different behaviors, and that’s why we’ve chosen to include them in this chapter of techniques and procedures that every parent should know.

  Because we’ll be suggesting that you use these methods to tackle different problem areas in many of the subsequent chapters, we’re not only defining the terms here but we’re also including a detailed description of how to incorporate them into your child’s program of interventions. Once you understand the process, you’ll be able to individualize these approaches and be comfortable using them for whatever issues may crop up with your child at any time.

  Pivotal Response Treatment (PRT)

  Years ago, before there were very many kids with autism, my husband was watching a clinic session and pointed out that the kids just didn’t seem to be enjoying themselves during intervention. He had noticed that while the kids were learning, neither they nor their therapists(!) looked very happy. Because my husband is one of those people who verbalizes every one of his thought processes, he continued to ramble on about how the only thing they seemed motivated to do was to get out of the session.

  You have to remember that this was back when we were having kids sit in chairs for hours at a time while we held up flash cards to teach words, concepts, colors, and so on. When they responded incorrectly, we told them “no,” and when they were correct, we rewarded them with verbal praise and a small edible treat.

  My husband’s brilliant succession of thoughts got us thinking about how long it took to teach each behavior. We started chatting about how typical kids just pick up things without being drilled over and over again. That led us to a long line of research that looked at more effective ways of teaching. Our first publication focused on communication and incorporated motivational procedures that helped children learn to talk faster. That procedure was called the Natural Language Paradigm, or NLP. We soon realized that the motivational components that were helping children learn to talk so much faster also worked well at improving a number of other behaviors, from social interaction to academics.

  The other good news was that there were positive by-products of these motivational procedures. In short, the kids seemed to improve all around. This began our long search for “pivotal” areas—areas that, when taught, would result in a broader range of positive changes in the kids. We were, in essence, trying to develop an intervention that was more efficient and more effective. That’s how the term Pivotal Response Treatment was coined, and our subsequent research over the years has focused on finding pivotal areas. To date, we have studied motivation, self-management, initiations, responding to multiple cues, and empathy.

  Motivation

  We talked a lot about motivation in Overcoming Autism, and it’s just as important with older children and adults. As I mentioned above, after many years of research, we’ve identified several components that reliably improve motivation—or, specifically, increase responding while simultaneously decreasing disruptive and off-task behavior. Meanwhile, during the intervention, the children smile more, look more engaged and interested, and overall appear happier. These motivational components are as follows:

  • Choice. No matter how old you are, you appreciate being given a choice. Strive to always give your child some choices in the desired task—they can be about choosing the assignment, the materials he’s going to work with, where he wants to sit, the order of work, the writing implement, whom he’s going to work with, and so on. The more kid-appropriate choices you can add to any given activity, the more involved and motivated your child will be. Try letting him pick a recipe to cook for dinner (you can also use the recipe to practice his reading and even have him do some fractions by doubling the recipe), or pick out his own outfit, or decide which summer camp he wants to go to. Your child will be a lot happier and more motivated if you give him choices.

  • Interspersing easy and hard tasks. Let’s face it, if you struggled through work every day or picked up a book where every word was one you hadn’t heard before, you’d probably avoid that job or that book. That’s exactly the situation in which we all too frequently place kids with autism. Too often we find something they can’t do, then repeatedly drill them on it until they learn it. Doesn’t sound like fun, does it? Now think about giving the kids lots of easy tasks, so they build up their confidence, then every now and then throw in a hard one. Because they have the momentum going, they’ll tackle the hard task willingly and surmount it a lot faster.

  • Task variation. Everyone gets bored doing the same thing over and over again, and teens and young adults on the spectrum are no exception. Learning is much faster if tasks are varied frequently. This goes along nicely with interspersing easy with hard tasks and makes the teaching sessions a lot more fun.

  • Natural reinforcers. Any time the reward for something is directly connected to the child’s behavior, she’s likely to respond better. Think about it. Adolescents can spend hours reading directions about how to play the latest video—but give them a required reading book for their English class and it’s a struggle to get them to read the assigned thirty pages. Teens can do rapid computation if they’re figuring out their allowance—but give them a page full of math problems and it isn’t fun. Any time you can develop activities and academic assignments with natural reinforcers, kids will do better. One example I give later in the book is of a boy whose parents wanted him to do chores: setting the table was a great one to start with, because it led instantly to getting to eat dinner—a natural reinforcer. Always look for the things your child enjoys and tie them into the activity directly. If your daughter likes to buy CDs and you want to improve her social conversational skills, have her buy them herself from the clerk and make sure she says a perfect “How are you? May I buy these, please?” The reward of getting the CD she wants directly reinforces the effort she makes to interact.

  • Reward attempts. If your kid is trying, he needs to be rewarded—even if the attempt isn’t perfect. Kids on the spectrum often experience so much repeated failure that they give up trying. If we reward them for every attempt, no matter how imperfect it is, their responding will be greatly improved.

  All of the above motivational components have been researched separately, and when they’re put together as a package, you’ll get far more out of your child. They’re critical, because they have so many other positive effects, like reducing avoidance and disruptive behavior. The kids are happier, more interested, work harder and longer, and are just all around better learners if motivational components are woven into teaching.

  Prompting

  Prompting, put most simply, is a verbal or physical action that increases the likelihood that a child will be successful. Prompts can accompany instructions or can be cues that help him be successful with assignments, social interactions, transitions, or any other area your child may need more help with than his peers. Most children will need some type of prompting when learning a new activity.

  Prompting is extremely useful, but it has to be done in a systematic way. For examp
le, if your child spends all of his breaks in the library and doesn’t socialize at all, you’ll need to determine if he needs someone with him all the time, or if some initial prompting is enough to get him mixing with the other kids. Then you’ll need to determine a prompting fading system. This largely depends on the child’s behavior and rate of learning—if he’s learning the behavior quickly, whoever is accompanying him can fade more quickly.

  Prompting works well with promoting social conversation. For example, if you’re trying to get your child to ask more questions, you may need to start with a fairly intrusive prompt, such as, “Did you hear that, Johnny? Ricky just said he’s hungry. Why don’t you ask him ‘What do you want to eat?’ ” Once he’s starting to ask questions, you can fade your prompt to “Oh, Johnny, I wonder what Ricky wants to eat.” That can be further faded to, “Oh, really?” with a glance at Johnny, and so on. You get the idea. You’re moving down the prompting “hierarchy,” going from the most intrusive prompting—letting your child know exactly what you want him to do—to the least intrusive—just reminding him it’s time to say something. Your goal is to fade out completely.

  The problem is that most people don’t have a prompting hierarchy and they get stuck giving the same prompt over and over again. Teaching any new behavior requires prompting at first, but if you don’t work toward fading those prompts, you’ll have the child dependent on you for life. Kids with autism have been known to get hooked on prompts, so you’ll want to make sure they are as subtle as they can be, and you’ll want to fade them as quickly as possible. So remember, prompting is a temporary instruction or cue that is designed to help your child learn or engage in a desired behavior.

  One trick we’ve learned is that if you can make the prompt part of the activity, your child is less likely to get hooked on the prompt itself. We learned this years ago when we were teaching letters and were prompting the kids by pointing to the relevant part of the letter, for example, b versus p. When we pointed, the kids got hooked on the pointing, but when we made the line of the b go really far up and the line of the p go really far down, the kids understood where we were drawing their attention and learned what to look for right away.

  Most important, though, remember that your goal with prompting is for it to fade away entirely. It’s a teaching tool, not a crutch for your child to lean on forever. For example, if you’re teaching her to greet people, you may need to start out by verbally prompting her: “Sarah, say hi to Beth and shake her hand.” Gradually, you’ll want to fade out the verbal prompt, perhaps by just saying her name (“Sarah?”), then just looking at her expectantly, with steps in between if she needs to go more slowly. This gradual prompt fading will help her learn the new behavior without getting hooked and dependent on the prompt—a prompt-fading paradigm needs to be in place if she’s going to learn to perform the new behavior by herself.

  Partial Participation

  Partial participation is one of the most important strategies for inclusion, and we want your child to be included as much as possible. Too often I’ve gone into a classroom and discovered that my student there was given a completely different assignment from the other students’. That’s not what we want. The idea of partial participation is that the student will learn the same material as his classmates, but it will be modified to his level.

  A simple practical example of partial participation can be found in almost any home at dinnertime. After dinner, everyone is expected to help clean up. But you aren’t going to have your preschooler load the breakable glasses into the dishwasher. You’ll save that job for the older kids and maybe give the toddler the spoons to load. Your toddler is learning how to do dishes, but at his own level.

  Now consider your adolescent. You want her to participate in the same activity as everyone around her: if her class is writing a twenty-page history paper, you don’t want her off by herself watching video games or doing some simple math worksheets. You want her to write a paper too, at the highest level she’s capable of, which may be somewhat lower than the other students’—say, a three-page paper. Your child may also need more specific instructions, such as suggestions at the start of each paragraph, for example, “Write a paragraph here about where the Incas lived”; “Write a paragraph here about what the Incas hunted, ate, and wore for clothing”; “Write here about the pyramids the Incas built”; and so on. This way, your child is learning to write a paper and completing a part of the same assignment as her peers, but again, at her own level. I haven’t seen assignments that couldn’t be altered in some way to help a child on the spectrum complete it successfully, but it does take a little work, and that’s why there is special education staff in the schools.

  Partial participation allows your child to be actively involved in the same activity as his peers and to learn the same general concepts, but at his own level.

  Priming

  I love priming. Almost every kid I work with has priming in her Individualized Education Program (IEP) or as part of her home or community program. In every arena—academics, dating, job training, vacations, even doctor visits—your kid can benefit from priming, which essentially involves previewing materials before you’ll need to use them or an activity before it actually happens. We’ve used priming for all ages and all subjects.

  Generally, we try to conduct the priming sessions in a relaxed manner. It should be a fun way of acquainting the person on the spectrum with a future task or activity that might otherwise prove difficult to manage. Usually, priming sessions are scheduled close to the time of the actual activity—like the night before—but they can also be effective if done earlier.

  For example, I try to get the next year’s textbooks in the summer to review them in anticipation of the upcoming year at school. I have our college students get their books and each syllabus well before the start of the quarter so they can start learning the material. Before one of my clients goes on a date, I’ll usually review important skills, such as having him practice asking lots of questions and not talking too much.

  Priming sessions are easy to implement, especially if you have an organized teacher who plans lessons in advance, and research has shown that it can be immensely helpful with academics and with socialization.

  Modeling

  Modeling, or imitation, is a natural part of development. Children imitate what they hear and see. Adolescents and adults tend to imitate people whom they admire or who they believe are similar to them. If you’re using modeling as a technique for teaching, you need to make sure that the learner is tuning in to you and imitating the important behaviors.

  Often individuals with autism are not spending enough time with peers, so they end up imitating behaviors of the adults they interact with, which can be fairly different from those of kids their own age. So it’s critical that they spend time with their peers. Your child may specifically need to be prompted to look at his peers and engage in the same activities. This can be accomplished in classrooms (for example, your child can be prompted to check which page his neighbor has turned to) or in social situations (your child can be prompted to make comments during a sports event just like his peers). Adolescents and young adults on the spectrum are not usually that great at spontaneously modeling their peers, and that’s why they often need more intensive programs, but there are usually some specific areas we can teach the kids to model in a peer’s or sibling’s behavior. These can range from self-help skills to putting on makeup to class activities.

  But with adolescents and adults on the spectrum, you need to make sure they have the right peer models, and if you’re using modeling as a strategy, make sure that they know exactly what’s expected so that they’re focusing on the desired behaviors you want them to imitate and not on some other potentially less desirable ones.

  Video Modeling

  Video modeling works well with kids and adults on the spectrum because visual processing is usually a strength for them. It’s simple: all you need to do is grab a video camera and shoot foota
ge and then show it to your child. Your approach can range from simply showing her the good behaviors she herself engaged in (so she can increase their incidences) to showing her examples of good behaviors other people are engaging in. Some video-modeling programs also show the client examples of when they weren’t so successful and talk about how that behavior could be changed (see the example below), but it isn’t always necessary to show unsuccessful examples, unless you feel that it would be helpful in teaching the student how to respond in those particular situations. In video modeling, sometimes the desired behavior is exaggerated and/or done a bit more slowly to make sure the individual with autism is cueing in to the right behaviors.

  Video tape modeling is quick and easy, and kids these days are so used to their parents’ taping them that you can grab a camera anytime and tape a few minutes without alarming them. The clips don’t have to be long—usually in a couple of minutes you’ll be able to point out both strengths and weaknesses. When we do this, we always try to show our client more positive segments than negative ones, to keep his spirits up. We usually start and end with a positive one.

  For example, if we decide to work on not interrupting constantly, we’ll show our client a clip of when she listened attentively and we’ll say something like “I just wanted to show you how great this clip looks. You’re listening attentively and waiting until the person finishes her sentence before you say anything.” Next we might show a short clip of her interrupting and give feedback, such as “In this clip you started talking before the person stopped talking, so he didn’t have a chance to finish his thought.” Usually about five clips are enough to get the idea across.