“HELLO, FRIEND—NOW GO AWAY”
Everyone diagnosed with ASD has trouble with social interchanges, specifically with what we call reciprocity, the back-and-forth interactions that make up all social encounters. In the very remote, nonverbal children who have the most severe symptoms of ASD, reciprocity difficulties are obvious. In high-functioning children and adolescents with ASD, however, reciprocity problems may be more subtle. Parents often describe a feeling of one-sidedness in interactions with their child. Sometimes parents feel as if they must carry the whole relationship, supporting and scaffolding the interaction to establish some meaningful connection. If they don’t start the conversation or ask the specific questions, the child may have very little to say or appear totally content on his own. Other parents describe their child as having his own agenda: the child either tells the parents what to do or talks on and on without paying much attention to the parents or altering his behavior in response to what the parents say or do.
When Seth starts talking about the stock market or the national debt, there is no stopping him. During dinner, he likes to tell his parents about the NASDAQ’s performance that day. After repeated attempts to introduce other topics at the dinner table, his exasperated parents find themselves ignoring Seth when he talks about finances and carrying on their own conversation. They aren’t sure whether to be worried or relieved that Seth barely seems to notice that they aren’t paying attention and keeps talking. If they make a comment or try to add any relevant information, Seth pauses politely but then takes up where he left off, as if his parents hadn’t said a word. His parents do consider this a small success, since just a year earlier Seth would become extremely upset whenever anyone made a comment and feel compelled to start anew, repeating every single thing he had said prior to the point of “interruption.”
Social reciprocity problems may be even more evident with peers. Children and teens with ASD are often described as “on the periphery.” They can be seen walking around the perimeter of the playground, uninvolved and seemingly uninterested in the boisterous play going on around them. They may demonstrate a strong need for control and insist that other kids follow their own rules. If peers balk at this, the child with ASD may complain or express sadness because “other kids don’t want to play what I want to play,” but show little ability or motivation to negotiate or compromise.
Seth’s parents often got reports from his teacher that Seth was “bossy” with other kids. They asked the school psychologist to observe Seth on the playground to collect some examples of this behavior, so that they would be able to work with him at home using specific situations and examples from the school day. The psychologist told them that Seth spent most of recess walking around the playground fence, talking to himself under his breath. When other children called out to him, Seth usually didn’t seem to notice. Occasionally, he would reluctantly join games in progress. During the psychologist’s observation, Seth accepted an invitation to play freeze-tag but then insisted that no one touch him and that he be allowed to be “it” immediately. He protested loudly and tried to hit the child who tagged him out. Seth eventually went back to the fence, where he began to drag a stick against it as he circled the playground’s edge, far from the other children.
In structured settings, such as school or scout groups, some children or teens with ASD may interact with other kids and even feel a bond with some of them, but few pursue these relationships outside these settings. For the few individuals with ASD who do seek out other children outside prearranged situations, often there is still a relative lack of depth in the relationship. It may not be fully mutual, with one person being more committed to and interested in the relationship than the other. The relationship may be limited in focus, revolving primarily around a shared interest—for example, the kids may play video games side by side, but don’t do anything else together. Or the friendship may not involve the same level of intimacy (for example, sharing secrets and feelings, relying on each other for support or help) as expected for a child of that age. Research studies show that many children with high-functioning ASD have a very limited concept of friendship. When asked what it means to be a friend, they give simple and concrete explanations (“someone who is nice to you” or “you play with them”) and are much less likely than other children of the same age to mention qualities such as companionship, affection, selectivity, and trust.
Derrick, a young boy with ASD, volunteered that he had many friends but then added poignantly, “Some of them are mean to me.” Upon further questioning, it came out that Derrick considered anyone in his class whose name he knew to be his friend. Like many children with ASD, Derrick was very vulnerable to teasing because of his social naivete and unusual style of relating to others. He recounted how earlier that day a classmate had given him a piece of candy; after he’d taken a taste, the child “informed” Derrick that the candy had “drugs” in it. Derrick spent the rest of the school day worried and crying.
How children and adolescents with ASD react to their lack of friends and to peer rejection varies. Some desperately desire friends and feel left out and lonely. Others seem quite content; they either don’t notice or don’t care that they have no friends—they are truly “loners” at heart. Still others vary at different ages, in different settings, or from hour to hour, vacillating between feelings of loneliness and taking pleasure in solitude. Some adults in our social support group articulately describe a yearning for contact with others, but then only limited tolerance for brief interactions (summarized in one Internet chat room as “Hello, friend—now go away”).
Social reciprocity problems are also evident in conversation. There may be very little back-and-forth, with domination by the person with ASD, who does not pick up on cues from the other person that he or she has something to say (as with Seth). The child with high-functioning ASD may not ask questions of others, particularly about their opinions, feelings, and experiences. The child may have difficulty keeping conversations going, particularly when direct questions are not posed.
Seth was playing on the sidewalk in front of his house with some action figures. A neighbor boy of approximately the same age came up and asked Seth where he had gotten the figures. Seth replied, “Disneyland,” without looking up. The boy said excitedly, “Oh, I’ve been to Disneyland too!” Seth said nothing and the boy eventually walked away.
Many people with ASD ask questions when they need to find out something but are much less comfortable making comments or “small talk.” In fact they may have trouble with social chat and may rarely talk purely for social purposes.
Clint was in an elevator riding up to the fourth floor of the building in which his social support group took place. The group’s therapist got in on level 2 and smiled at Clint. Last week’s discussion in group had been about making small talk. One of the specific situations they had role-played was what to say during a brief interaction on an elevator. A few topics had been mentioned: perhaps the weather or the traffic. Clint decided to try something new. He said to the therapist, looking him directly in the eyes as he’d learned, “Gee, what’s that terrible smell?” The therapist smiled politely, shrugged, and said, “I’m not sure. How was your drive down today?” Clint persisted, saying, “Boy, something really smells bad in here!”
John, another young man in the social support group, made this comment after a group discussion about conversation. “I know there is something called ‘reciprocity.’ I’ve heard of it. I know what the word means. I know it exists. I just don’t understand it. I can’t even identify it when it’s happening. It’s much like humans might feel about echolocation [of bats—this young man’s interest]. We know echolocation exists. We just can’t hear it, nor would we know how to understand it if it was within our auditory range. That’s how reciprocity is for me.”
Kids with ASD tend not to use the same kind of social body language that others use. Their eye contact may be limited, they may not smile at the other person, their posture may not convey interest and attention, and they may not use socially encouraging gestures such as nodding. All of this can give the impression that the person with ASD is not truly engaged in the conversation, is not listening, or is bored. Other problems sometimes seen in ASD, such as aggression or an overly blunt communication style (sometimes interpreted as rude or offensive, although it is unintentional), can also pose a threat to social relationships. Even the special interests of individuals with ASD contribute to poor reciprocity because they are so focused and idiosyncratic that they are difficult for others to share (or the child doesn’t actually want to share them, as with Seth). And there is very strong research documentation, in addition to many descriptions from parents, of lack of empathy and difficulty taking others’ perspectives. All in all, kids with ASD often seem very self-centered. Although there is no intent to be selfish, and there is no malice behind their behavior, their social shortcomings can have a wide-ranging negative impact on their lives: in their relationships, on their academic and occupational success, and elsewhere.
Naturally, then, as parents you want to help your child or teenager learn to be a social creature in our social world. But how? If your son wants friends but can’t make them, how can you help? What can his teachers do? What can you expect from a therapist? If your daughter seems to have little interest in friends, but needs to work on social behaviors so that she can someday live independently and keep a job, where can you turn for help? Strategies for improving social reciprocity in kids with high-functioning ASD follow.
STRATEGIES FOR IMPROVING CHILDREN’S SOCIAL BEHAVIOR
Social skills can be taught in many different settings. The traditional arena is in a school or clinic, through an organized social skills group. However, as you shall see in this chapter, there are a variety of other places where and times when you can help your child acquire critical social skills: at home, around the neighborhood, and in nontherapeutic group settings (for example, scouts). Many of the principles and techniques used in typical therapeutic groups can be used by parents at home. In fact, social skills groups are much more beneficial if supplemented by follow-up at home. So whether your child attends such a group or not, it will be important for you to know what you can do outside the clinic to reinforce more appropriate social behavior too.
What Your Child’s Therapist Can Offer
Group Social Skills Training
Your family may have adapted to your child’s social deficits, and therefore you might not consider the problem an enormous one at home in your daily activities. But social difficulties tend to be more pronounced in groups and with peers. So social problems may in fact be fairly significant for your child at school, at the local playground, or in a scout troop. We know that people with ASD have trouble generalizing from one situation to another, so it’s important to teach social skills in settings that are similar to those in which the children experience difficulty. When teaching social behavior to a child with high-functioning ASD, the therapist or teacher may be impressed by how fast the child learns new skills, only to be surprised later at how poorly these skills are applied, in real-world settings, with peers. Thus, teaching in a group context is essential.
Formal instruction, with specific skills taught sequentially, is also important. Most parents are not equipped to deliver this type of instruction, so you will probably have to look for a group at an outpatient clinic or school, where the therapy will be delivered by a therapist or teacher. This does not mean, however, that you’re not part of the process. As managers of your child’s care, you should think of yourselves as consumers of the social skills training that teachers and therapists can offer your child. If the group training offered to your child diverges substantially from what we describe here, in ways that seem unconstructive or counterproductive, you may want to look elsewhere for a different program or concentrate on other ways to teach social skills, outlined later in this chapter.
There are a few published manuals to teach social skills to high-functioning children and adolescents with ASD (such as Children’s Friendship Training, included in the Resources) and a variety of approaches are also described on the Internet (also included in the Resources at the end of the book). As with interventions in the schools summarized in the last chapter, there are some basic principles for teaching social skills that capitalize on your child’s strengths. We summarize these principles and give you examples of how they might be implemented in a therapy group in the box. Social skills training for children with ASD should break down the complex social behaviors that most children learn automatically into concrete steps and rules that can be memorized and practiced in a variety of settings. Abstract concepts, like friendships, thoughts, and feelings, should be introduced through visual, tangible, “hands-on” activities as much as possible. For example, the therapist might hold a cardboard arrow at the side of your child’s face, pointed at the person to whom he is speaking, to help him learn and practice eye contact. Written schedules use your child’s natural reading abilities to help him or her transition from one task to another while minimizing anxiety. A predictable routine will capitalize on your child’s memory and rule-following strengths to help him or her anticipate the different group activities. There should be a behavioral plan that specifies individual goals for group members and a specific system for delivering rewards. Social skills training will be difficult for your child and, as with all people, he or she may need to be enticed to participate in this less-than-favored and possibly very challenging activity.
A final important ingredient is collaboration with parents to promote generalization. Weekly therapy in a clinic will do little to change basic deficits of ASD unless there is daily practice and reinforcement of the skills being learned in situations outside the therapy room. Thus, it is very important that you be aware of what your child is learning and that you be taught how to practice the skills or implement specific techniques at home, in the neighborhood, or at school. This may be accomplished partially through homework. It is also important that the therapists or teachers provide explicit opportunities to address the skills outside the group, in more natural settings for the child (for example, in the classroom, park, video arcade, bowling alley, or restaurant), perhaps through community outings. It is important that the teacher or therapist working with your child tell you how and where to help your child practice away from the clinic or school. If this is not happening, request a private session with the therapist or group leader. Say that you want to be more involved in your child’s therapy and request specific assignments or procedures for following up on skills at home.
Basic Principles for Teaching Social Skills
Make the abstract concrete.
•Provide rules, such as “Make eye contact for 5 seconds when you begin a conversation.”
•Break complex behaviors into steps, such as “A conversation consists of a beginning, a middle, and an end,” and teach each step.
•Use visual cues, such as a double-tipped arrow, to depict the turn taking and back-and-forth of a conversation.
•Use hands-on activities to practice, uch as role-playing a conversation.
Help with transitions.
•Provide a written schedule that outlines the group activities in order.
•Use a predictable routine every session, such as an opening discussion, a group activity, a role play, a snack, jokes, and good-bye.
Motivate.
•Set realistic goals for each child.
•Provide rewards for attaining goals.
Generalize.
•Establish communication and collaboration between parents and therapists.
•Give assignments to be completed outside the clinic, such as calling another group member and having a phone conversation.
•Take outings into the community to practice skills, such as having conversations at a restaurant.
A variety of topics should be covered in any social skills group for children and adolescents with ASD. Perhaps most basic is teaching the nonverbal behaviors that are important to social interaction, such as appropriate eye contact, social distance, voice volume, and facial expression. We call this social body language. A typical program might also include the following topics:
•Friendship skills: greeting others, joining a group, taking turns, sharing, negotiating and compromising, following group rules, understanding the qualities of a good friend.
•Conversational skills: starting, maintaining, and ending a conversation; taking turns talking; commenting; asking others questions; expressing interest in others; choosing appropriate topics.
•Understanding thoughts and feelings: showing empathy, taking others’ perspectives, handling difficult emotions.
•Social problem solving and conflict management: coping with being told “no,” being teased, being left out.
•Self-awareness: learning about autism spectrum disorder, personal strengths, unique differences, and self-acceptance.
Cognitive-Behavioral Therapy
Another clinic-based therapeutic model that may be useful to teach social skills to adolescents and young adults with ASD (those who are able to tolerate a bit more abstraction) is called cognitive-behavioral therapy. It was originally developed to help people with depression, who are often highly critical of themselves, pessimistic, and likely to interpret neutral events in a negative light (the “glass-is-half-empty” kind of person). At the crux of this therapy is showing people how their thoughts influence their feelings and how negative “self-talk” is related to (even causes) feelings of sadness and depression. The antidote, in a cognitive-behavioral therapy model, is to learn more positive self-talk, changing negative thoughts into positive ones and learning new ways of thinking about the self and the world. Cognitive-behavioral therapy turned out to be remarkably effective and is still a widely used treatment for depression, anxiety, and other psychological disorders.
Cognitive-behavioral therapy helps people focus on the causes and consequences of their behavior, as well as on the emotions and thoughts that accompany their behavior. Its relevance to people with high-functioning ASD should be readily apparent. Often, those with ASD have trouble reading the social cues in the environment accurately, resulting in odd or unexpected behavior. They often report difficulty understanding their feelings and trouble differentiating among similar emotions. For example, some people with ASD say that they can tell when they feel “bad” but are not sure if they are sad or angry, can’t calibrate just how “bad” they feel (furious or mildly irritated), and, most confusingly, sometimes aren’t sure why. And they often have poor understanding of the consequences of their behavior. So cognitive-behavioral approaches may be of some use for ASD.
Josh, a 15-year-old with ASD, came to group one day and announced that he had had a bad week because he got expelled from school. When queried about the circumstances, he replied simply that he had pushed another boy’s head into a water fountain. No other explanation was forthcoming, and Josh seemed almost puzzled by what had happened. The cognitive-behavioral model was used to help Josh and the other group members understand the links among situations, responses, and consequences. The group leader stressed the importance of four aspects of Josh’s situation: who, did what, when, and where. Josh began with a simple description: “This kid made me mad at school.” With the structural aid of a written list, he was eventually able to describe many specifics of the situation: details about the boy involved, what he had done (he called Josh “fatso”), time of day, and exactly where the incident had occurred. The group then explored three aspects of Josh’s response: his emotions, his actions, and his thoughts (or self-talk). While he could readily identify his actions (shoving the boy’s head into the water fountain), his emotions (shame, embarrassment, and anger) and especially his self-talk were murky to him. Finally, the group discussed both the short- and long-term consequences of Josh’s response. Josh had a clear understanding of one consequence (his expulsion from school), but seemed to have very limited awareness of other outcomes of his actions (for example, that the other boy had been injured and that Josh might be more likely to be teased again in the future because of his extreme reaction). Using a cognitive-behavioral model significantly improved Josh’s understanding of the situation and his ability to prevent a recurrence in the future. The group also addressed ways to change Josh’s response, including substituting more positive self-talk, using relaxation techniques, and alerting a teacher when faced with teasing.
Cognitive-behavioral therapy, delivered in either a group or an individual format, may be helpful for teens and adults with ASD, not only because of the mood and anxiety problems that are so common in this group, but also because of the explicit links this therapy model makes among situations, responses, and consequences, concepts that are difficult for those with autism spectrum disorder. Cognitive-behavioral treatment is more structured and concrete than other forms of psychotherapy. Relying less on insight and judgment than other treatment models, it focuses instead on practical problem solving, making it an “autism-friendly” form of therapy. However, cognitive-behavioral approaches are probably too complex for most younger children with ASD, so it is best to wait until adolescence and adulthood, when abstraction ability matures, to try this type of treatment.
Strategies for Teaching Social Skills Outside the Clinic
Earlier we stressed the importance of addressing social issues in a group setting, since this is where social problems usually arise, and thus this is where your child needs to practice social behavior. We also emphasized that you should practice and support your child’s emerging social abilities at home whenever possible and that social skills training in a clinic alone, one hour a week, would not do much good. In the following sections, we describe a variety of resources and techniques for working on social skills that can be used by anyone, across a variety of settings. These techniques will help your child improve her social behavior even when she is not within the four walls of the clinic or school, with a trained professional there to assist her. You are a key player in this endeavor. The following approaches do not require a professional degree to implement, just an interest in trying, a willingness to keep trying, flexibility, and a sense of humor. It is often helpful to initiate one intervention at a time so that you can monitor its success and get some sense of whether changes in the targeted behavior are occurring (and why). As always, it is useful to implement the intervention across settings whenever possible, to increase the rate of skill acquisition and improve the likelihood of generalization. And, should you run into any problems or need advice as you try any of these interventions at home, seek the help of an experienced ASD specialist.
Feedback and Modeling
Parents and siblings can be valuable role models for the child with ASD. To be effective, however, you need to be very explicit and concrete about the skills you are modeling and about drawing your child’s attention to them. You can do this in a variety of ways, but perhaps the most powerful is to videotape interactions for later review. This not only appeals to most children, all of whom like to “star” in their own movies, but also permits “real-time” provision of pointers. It is a more effective strategy to pause a video and highlight a problem or make a suggestion right at that moment than it is to try to reconstruct the situation later. Choose your battles—decide first what skill you want to highlight (for example, eye contact, turn taking, appropriate conversational topics, or sharing during play) and then focus your comments on that specific skill. Be sure to praise your child for things he is doing well (or even doing OK) and gently provide guidance in behaviors where he could improve. Try to phrase suggestions positively, giving examples of what your child can do to improve, rather than focusing on mistakes and using a lot of “don’t” statements. It can sometimes be helpful to videotape siblings or peers engaged in similar interactions. Point out things those children did well (“See how Amanda is looking right in my eyes and nodding while I talk to her?”) to explicitly draw your child’s attention to the way the behavior is supposed to be performed. But also point out things that did not go smoothly in the interaction, so that your child with ASD doesn’t feel singled out or criticized unfairly.
Parents and siblings can provide a daily time to practice conversational skills at home, much as time is set aside for homework or piano practice. This might involve a 10-minute period each day in which you and your child talk in a structured manner. You may need to write down topics beforehand, to promote topic maintenance, avoid drifting to more preferred subjects, and help your child formulate some ideas in advance. You may want to use some visual aids, such as a cardboard arrow or spinner to indicate whose turn it is to talk or a script with suggested questions or comments. As just described, you can videotape the conversations for later review and practice.
You may have been frustrated many times by the small amount of personal information that your child shares spontaneously with you. So it may seem ironic that you may also have to watch out for oversharing of personal information. When they decide to share, many children with ASD don’t know where to draw the line and end up creating an awkward situation for themselves and those around them. One young lady with high-functioning ASD, who wondered about her romantic attraction to a classmate, suddenly began to explore this attraction aloud in the lunchroom. Many of her classmates felt uncomfortable with this sudden, excessive disclosure and started to avoid her. One way to prevent this situation is through the provision of very explicit feedback to your child. Most children and teens with ASD do not catch on to subtle suggestions about behavior. Therefore, you need to be explicit in defining for your child which topics are appropriate and which are not, perhaps in the form of a list. Make sure your child learns to recognize some signs that the other person may be disinterested in or uncomfortable with what he or she is saying, such as looking surprised, trying to change the topic, or blushing, and then has a list of more appropriate conversational topics to revert to.
How to Get the Most Out of Clubs, Activities, and Play Dates
Just putting your child in situations with other children isn’t enough to ensure that his social issues will be addressed. The suggestions in this section are a bit more focused than just enrolling your child in extracurricular activities that expose him to peers. Social groups, like scouts, can be helpful, but usually there must be some explicit structuring and specific interventions to make such situations beneficial. It may be more useful to choose some social group activity that revolves around your child’s interests and talents, to make the experience palatable and to expose your child to others who are like-minded and therefore more inclined to accept and appreciate him. Many communities have computer, reading, or science clubs that may interest your child. If there is a university in your area, inquire about programs it may have for youth, which often revolve around similar themes.
Drama clubs can also be very helpful for children with ASD. Your child may initially be self-conscious or otherwise reluctant to try such a group, but the benefits can be substantial. After all, what is acting other than being told what to say, how to behave, how to make your voice sound, and how to make your face look in certain social situations? We have seen several children with high-functioning ASD prosper in drama groups.
If the situation is structured appropriately, parents can help guide younger children with ASD through a “play date” and make it a successful learning experience. But don’t stop with inviting another child over to play. It is important to choose an activity for your child and the friend to do together; don’t rely on their ability to come up with something interactive. Many children would sit side by side and play video games the whole time. Choose an activity that requires some interaction, such as playing a board game, cooking a simple recipe, or working on an art project. Build in explicit social opportunities, such as giving one child the flour and the other child the measuring cups, or having each child decorate a cookie for the other person. This gives your child the chance to practice requesting, sharing, turn taking, and perspective taking. Be sure that the activity is appealing to both participants. And be sure that your child knows how to perform the requisite behaviors beforehand, perhaps by playing the game or making the recipe first with you or a sibling. Don’t make learning the rules of the game part of the play date; have the goals of the play date be social, pure and simple. That is, have your child take existing skills and now use them with a peer. You may need to be present during most of the interaction, prompting and reminding both children about turn taking, sharing, negotiating, and the like. You may even find it helpful to use some visual aids to structure the interaction (such as a spinner to indicate whose turn it is, a recipe with pictures showing all the ingredients, or a written list of game rules). Your goal is to reduce your intervention and monitoring until the children can play together without adult assistance. This may take some time, but is more likely to happen eventually if you first provide structure than if you simply invite a peer to your home.
Keep in mind that most children—those with typical development included—need a lot of structure to have a successful play date. Squabbles and difficulties sharing and accommodating to others are part and parcel of children’s social development.
Social Scripts
Social scripts are nothing more than written prompts or guidelines for what to do and say in a common social situation. Although you may not be conscious of using them, most of us have a variety of social scripts in our repertoire that we use when faced with a specific social situation. For example, we all generally know what to do and say when we meet someone new: we might extend our hand, say hello, introduce ourselves, ask the other person’s name, and so on. Most people also have a pretty consistent social script that they use when ordering food in a restaurant and when answering the telephone. People with ASD, however, usually haven’t constructed such social scripts or have them accessible. Thus, it can be very helpful to provide such a script, in a format conducive to how most people with high-functioning ASD learn (using written cues or other visual structures, for example). Given their typically good memory skills, children with ASD may well be able to memorize components of the script so that the written instructions can eventually be dispensed with. Scripts are not difficult to write and require little more than putting yourself in your child’s shoes and writing down the script you (or a child) would use in that situation.
Clint very much wanted to ask a woman he knew at work to a dance at his church, but he was very apprehensive about calling her on the telephone. His father reminisced about his own difficulty calling women for dates when he was a young man and suggested that Clint use a “phone script” that outlined the important things he needed to say. Clint warily agreed. His father wrote out the following script:
“Hello, is Cindy there please?”
“Hi, Cindy, this is Clint, from work.” (Pause until you make sure she knows who you are.) “Am I catching you at a good time to talk for a moment?”
If no: “When could I give you a call back?” (Pause for answer.) “OK, see you at work tomorrow. Bye.”
If yes: “There’s a dance at my church this Saturday evening. I was wondering if you are free and might like to go?”
If no: “Too bad. How about doing something else the weekend after? Maybe a movie?”
If yes: “Great. My dad will give us a ride. We’ll pick you up at 7:00. What is your address?”
And so forth. Other examples of scripts you might provide to your child or teen include how to indicate uncertainty, ask for help, or buy something in a store. It is always best to practice the scripts several times with your child before expecting her to use them in public. Videotaping and reviewing the scripted interaction can again be extremely helpful.
Social Stories
Social Stories, mentioned in Chapter 6, are written, sometimes illustrated, stories that present information about social situations. They were developed by Carol Gray, an educational consultant in the Michigan public school system (see the Resources for more information). They are different from social scripts in being much less directive. Instead of just telling what to do and say, they supply critical information about the social situation, highlighting certain social cues and other people’s motives or expectations. Most important, Social Stories provide a rationale for why the child should do or say what he is told to do or say. Carol Gray explains the need for such justification through the following example. If someone told us to go stand on our head in the corner, either we would refuse or we’d do it once (while the other person prompted and watched us) and then never again. Why? Because that behavior made no sense in that particular situation. It is much the same with our children with ASD—we may tell them to do or say something that seems completely alien to them. So it is incumbent upon us to provide the reason behind certain social behaviors if we want our children to use them regularly. In fact, Ms. Gray suggests (and many researchers also believe) that this failure to understand the “why” of social behavior is at the crux of many of the difficulties associated with the ASD.
Ms. Gray outlines some very specific rules for writing an effective Social Story. For example, it should contain more informative statements (explaining social cues or providing reasons) than directive statements (telling the child what to do and say). Directives should be stated positively (“Do this” rather than “Don’t do that”). It is outside the scope of this chapter to outline all the specific instructions for writing Social Stories; we refer you to the Resources for additional information if you are interested in these stories, which are widely used by parents in homes and are not difficult to design. Here is one example of a Social Story written to help a child learn appropriate behavior in the cafeteria at school.
Tracy, who has high-functioning ASD and is 9 years old, had trouble with many aspects of the lunch situation. She didn’t like to wait in line, she wanted to eat only desserts, and she cried and threw a tantrum when a hole was punched in her lunch card. The Social Story her parents wrote helped her understand why she needed to do these things. It also gave her some clear concrete rules she could follow. Her teachers put each bulleted item from the Social Story on a separate piece of paper, let Tracy draw a picture to illustrate each page, and allowed her to carry it on her tray at lunch. This intervention was very helpful in changing Tracy’s cafeteria behavior, and her tantrums reduced dramatically almost immediately. Tracy’s parents began making Social Stories to help her understand how to behave in many other difficult social situations, including being nice to her new baby brother, taking a shower, following mealtime routines, sitting still in synagogue, and riding an escalator at the mall.
Eating in the School Cafeteria
•When it’s time for lunch, my teacher tells the class that it is time to go to the cafeteria.
•I walk to the cafeteria with all the other kids. I try to walk slowly.
•We have to wait in line for our food. I wait my turn to get my lunch. It is important to wait my turn. Other kids don’t like me if I push ahead of them. I want other kids to like me.
•The lady behind the counter is very nice. She asks me what I want. I get to choose a main course, a vegetable, a dessert, and a drink. I point to each food, and she puts it on my tray.
•I can have only one dessert. If I have too much dessert, I might feel sick.
•I say “thank you” to the lunch lady.
•I push my tray to the end of the line and give my lunch card to the person at the cash register. She punches a hole in it. This hole tells them that I paid for my lunch.
•I take my tray to my table and eat with Susan and Jane.
Social Stories are thought to be helpful not only in providing justifications for social behavior, but also in being highly visually structured. They provide a written product that the child can refer back to at any time to remind him of appropriate social behaviors in the classroom (raising hand, waiting in line, handling a change in class schedule, and so on). Social Stories can be written on index cards and taped to a child’s desk, and many children keep their Social Stories organized in a notebook or on a tablet computer and enjoy rereading them with family or saving ones they no longer need as evidence of the progress they are making.
Narrating Life
The goal of Social Stories is to explain social cues and justify the importance of certain social behaviors to your child. There are other ways to accomplish this goal. One is a technique called “narrating life,” developed by Linda Andron, a social worker at UCLA who specializes in helping individuals with ASD. Dr. Brenda Smith Myles, a professor at the University of Kansas Medical Center, calls this approach “thinking out loud.” As these names for the technique indicate, it involves providing a running commentary of your behavior and thought processes. For example, you can verbally describe what you are doing, why you are doing it, how you are making decisions, why you are selecting certain behaviors instead of others, and what cues you are noticing. This technique is quite a bit like a Social Story, but it is not visual, nor does it have a concrete product. This may mean that it will be less useful for some children, but its appeal is that it is incredibly simple to implement and can be used anywhere, at any time.
When Seth’s mother went to the grocery store, she talked aloud to him as she performed every step of the process. As she chose a brand of soup, she said, “I think I’ll buy this brand today. We’ve been having the other brand for so long that I think we’re getting tired of it. Plus, this one is on sale.” As she looked for a special item, she said aloud, “When I can’t find something, I ask someone who works here. You can usually tell who is a store employee by their nametag.” As Seth’s mother chose which checkout line to stand in, she said, “This cashier looks fast and her line is pretty short. And she is smiling at everyone, so she looks friendly.” As they waited in line, she said to Seth, “Sometimes it’s hard to wait in such a long line. But it would be rude to push ahead, and others would get mad at me. And waiting gives me a chance to look at the magazines next to the checkout.” As she opened her purse, she said, “Before we leave, I need to pay for all these things. If I don’t have enough cash, I can use a check or a credit card.” As they left the store together, his mother said to Seth, “That cashier sure was nice. I always like chatting with the cashier. If I can’t think of anything to say, I mention the weather.”
Tony Attwood, author of The Complete Guide to Asperger’s Syndrome, suggests that parents help their child create index cards that contain relevant information about peers. Keeping information about other kids’ attributes, interests, and favorite activities in this format can make information easier to recall for your child and enable her to prepare in more concrete ways for interactions. Help your child use the cards to:
•Choose appropriate topics of conversation.
•Compliment others (through knowledge of their attributes).
•Choose activities that the peer might enjoy.
Friendship files thus not only promote friendship but, more broadly, teach your child important perspective-taking skills, such as being attuned to the interests of others and tailoring interactions around the partner.
Peer Coaching
A very different type of strategy that can be used to teach social skills is what we call peer mediation. What that means is that “typical” children (those without ASD) of the same age interact in a more natural setting with children or teens who have ASD. Just placing them in proximity to each other won’t be enough (this is probably already happening at school, and yet your child is still having social difficulties). Instead, the typical peers are explicitly taught how to initiate interactions, prompt social responses, give feedback, and reinforce children with ASD. They are given several simple guidelines for interacting with the person with ASD, such as staying near them, joining their activity, making comments, praising them for even small interactive behaviors, and being persistent. General information about ASD may be shared with the typical peers. Possible situations (for example, the child with ASD ignores the peer or talks on and on about reptiles) are role-played to give the typical peers some ideas about how to interact. After this, however, the adult does not serve as a therapist or interact directly with the children with ASD, but instead lets the peers behave and interact with them. The therapists remain present to support, encourage, and protect the child with ASD when necessary but try to deliver the treatment through the typical peers, effectively eliminating themselves as the “middle man.” Often peer-mediated interventions are done in schools, but they can also be implemented in a clinic or community setting—they have even been adapted for use in the home (see below).
Research demonstrates that peer mediation approaches have clear benefits. One study showed that the rate of asking for things, getting another child’s attention, waiting for a turn, and making eye contact increased two- to threefold after a peer intervention in a kindergarten classroom. It also appears that children with ASD generalize new skills to other settings and maintain them well over time, probably because the need to transfer newly learned social skills from an adult therapist to same-age typical peers is eliminated.
You may want to approach your child’s school to see if it would be willing to implement some type of peer-mediated intervention in the classroom. Or you may want to adapt this approach for use in your home, with siblings or neighborhood children serving in the role of the peer coach. If you do so, be sure to prepare and train the “peer” in advance. You know your child’s particular quirks and social difficulties, so prepare the peer for problems that might arise and role-play how to deal with them. Give the peer a few rules to guide the interaction (for example, stay near John, keep trying to play with him, and ignore it when he talks to himself). Initially, monitor the interactions, much as described above in the section on structured play dates. Then step back and let the children interact.
This is an activity intended to help children who have few friends become part of a group and be included in social activities. It is best implemented in a classroom or other natural group setting (for example, scout camp or religious classes). A social “map” made of concentric circles is constructed, with the child at the center, the inner ring containing family, the next ring containing other supports (teachers, therapists, clergy), and the outer ring friends. In a classroom, a teacher might first construct a Circle of Friends for a few typical children. Then she constructs one for the child with ASD. It becomes immediately apparent that the outer ring is visibly less dense relative to the typical peers, perhaps even empty. The teacher then asks for volunteers to be in the Circle of Friends of the child with ASD. These volunteers are given a variety of assignments, from greeting the child when she enters the class, to engaging her in play or conversation on the playground, to sitting with her at lunch. The success of the Circle of Friends program appears to revolve around close monitoring of the “volunteer friends.” Pretraining (much as is done with peer mediators in social skills groups, described above) is necessary. It should cover basics about ASD, tips to engage the child, advice about what to do when unusual behaviors occur, and some role playing of potential situations. Once the intervention starts, short but regular (weekly) meetings are needed. The classroom or resource teacher or another school staff member should meet with the volunteers, listen to how they helped the child with ASD that week, discuss problems that arose, and perhaps even role-play or otherwise give suggestions for how to deal with the problems.
A similar intervention could be done at home, with neighborhood peers serving as volunteer friends. Working closely with the peers, giving them appropriate guidance and follow-up, is just as important if the Circle of Friends is constructed at home as it is at school. Be sure that the children you choose to become your child’s friends are willing, eager, and well armed with information about your child so that they can be successful.
Linda, Joseph’s mother, decided to organize a Circle of Friends for him in their close-knit neighborhood. She contacted three of her neighbors who had children roughly the same age as Joseph, told them about the program, and asked them to ask their children if they would be willing to play. Two 8-year-old boys agreed to be in Joseph’s Circle of Friends. They already knew Joseph around the neighborhood and therefore were aware of some of his quirks, but Linda decided to tell them more specifics about ASD. She stressed that Joseph was very bright and told them of all his natural talents and special skills. She also told them that he sometimes had trouble knowing what to talk about and knowing when to stop talking. She role-played with the boys what to do when either of these situations arose. For example, when Joseph started talking about geography, she prompted the peers to say, “Oh, that’s pretty interesting. Did you happen to see the basketball game last night?” When Joseph started rambling, she taught the peers to hold up an index finger and say, “Whoa! Can I say something?” and then redirect the conversation in an appropriate way. She then gave each boy specific assignments, such as sitting with Joseph on the bus, riding bikes with him in the neighborhood cul-de-sac, and calling him on the phone. Linda checked in with the boys and their mothers by phone every week to see how things were going, if they had had any problems getting along, or had encountered situations that they didn’t know how to handle. Linda hoped that the boys would genuinely grow to enjoy Joseph’s company, but she decided that providing them with occasional treats, such as gift certificates to the video store and outings to the pizza parlor and video arcade, would help them remain committed to playing with Joseph. This was a lot of work for Linda, but the pleasure on Joseph’s face when he got a phone call or was asked to come ride bikes was worth it.
STRATEGIES TO IMPROVE YOUR CHILD’S ABILITY TO HANDLE EMOTION
One of the primary tasks of childhood is to learn to regulate emotional responses. For many children with ASD, the process of emotional self-regulation is delayed, and they are likely to need extra help learning to deal with strong emotions appropriately. For example, while most toddlers and many preschoolers regularly have tantrums when they are frustrated or don’t get their way, by the time they enter elementary school most typically developing children have few or no tantrums. Older children and even adolescents with high-functioning ASD, on the other hand, may continue to have tantrums because they have not yet learned how to regulate their emotions. Obviously, this kind of behavior does not help them fit in socially and can be one of the causes of social rejection and isolation.
One important aspect of emotion regulation is being aware of your body’s internal states and the cues indicative of emotional arousal. For example, when a person becomes frustrated, his muscles may tense up. He may feel a hot rush of blood to his face and a sudden surge of energy. Being aware of and interpreting these physiological effects of emotional arousal is difficult for many children with autism spectrum disorder.
Mateo’s brothers loved going to the neighborhood arcade and often pestered their mother to take them there. She felt torn because Mateo, a young boy with high-functioning ASD, had such a hard time at the arcade. He enjoyed the experience at first, but he became so caught up in the flashing lights and sounds that he soon was out of control. He would giggle uncontrollably, run around wildly, and tackle other children. The outing inevitably ended in tears and felt like a disaster to all involved. Mateo’s brothers pleaded with their mother to leave Mateo at home next time.
Tim, an adolescent with ASD, was a gifted student. Despite the fact that his arithmetic scores far surpassed his grade level, he had received several failing grades. His frustration threshold was so low that he frequently snapped in class when his pencil needed sharpening or he could not get the teacher’s help quickly. He seemed unable to monitor the increasing tension in his body until it overtook him in a physical outburst, at which point he would throw his books and papers to the floor, scream “I’ve had it!,” and march out of the classroom. The other students stared, whispered, and began to snicker.
In both of these examples, we see children who fail to monitor their level of arousal and encounter social difficulties as a result. There are a few strategies parents can use to help children learn to regulate their emotions better. First, you can encourage your child to use words to express her feelings. It is precisely when preschoolers learn to verbalize that their tantrums precipitously decrease. Begin by teaching your child to notice when she is experiencing an emotion, such as joy, anger, or sadness. Then verbally label these emotional states for your child and encourage your child to express these feelings in words (for example, “I am feeling angry!”). If your child needs it, you can also provide visual cues, such as a sheet of paper with several emotions depicted on it, to help your child figure out her emotional state (see the “Software and Applications” section of the Resources for further ideas).
After your child has expressed his feelings in words or by using pictures, provide some ways of coping with the emotionally arousing situations. At first you can make suggestions, even perhaps a list of coping strategies. For example, you can say, “If you are frustrated, you can ask for help or ask for a break or go on to a new problem.” Eventually, however, you will want to ask your child to come up with solutions by himself. Prompt your child to think of further alternatives to the strategies you have provided (“What else could you do if you get frustrated?”).
Sometimes, however, your child’s emotional state will be so strong that she’ll need techniques to calm herself before she can discuss her feelings and ways to cope with them. One technique that is often helpful is called progressive relaxation. While your child reclines and breathes deeply, verbally walk her through tensing (while breathing in) and relaxing (while exhaling) muscle groups from toe to head. As she becomes more comfortable with the process, you can teach your child to tense and relax the entire body quickly and subtly for use in stressful circumstances. An added benefit of this rapid relaxation technique is that the teaching process helps children better recognize the body states associated with tension and relaxation. A second calming strategy for your child is to engage in a relaxing activity, such as listening to music on an mp3 player or smartphone, chewing gum, drawing, having a back rub, or thinking of something comforting, such as a soft blanket or the fur of a favorite pet. A less direct strategy is to teach your child to ask for help or to remove herself from the situation when she becomes aware of potential overarousal. Tim, described above, might benefit from having a teacher’s permission to leave the room for 2 minutes if he is experiencing frustration. Parents and teachers can facilitate this system by providing clear places and plans for children to take a breather and specific signals or “break cards” to let others know they need time alone. Just knowing that this option is available may be helpful for your child with ASD. Most children will benefit from using a combination of these strategies for learning and maintaining emotional control.
DEALING WITH TEASING AND BULLYING
Many children and teens with ASD are teased, belittled, or bullied in school. A recent study by Dr. Paul Shattuck and colleagues found that almost half of children with ASD have been victimized by bullies. The peer mediation approaches described above appear to foster greater peer acceptance, which may reduce the frequency of victimization by peers that can be a common part of the life of a child with ASD. Peer buddies are especially useful to the child with ASD during unstructured times of the school day, such as lunch or recess. It is well established that bullies rarely target a child who is part of a group (or even just in a pair); they tend to go after children who are alone and thus vulnerable.
There are several other techniques that have shown promise in reducing the likelihood that teasing or bullying will occur. Many approaches involve similar ingredients to those used in peer mediation programs, including providing information about autism to classmates and creating regular opportunities for interaction between children with ASD and typical peers. Other programs involve assertiveness training and teaching the child specific techniques for standing up to bullies: asking for help, seeking out a safe teacher or place, walking away, using humor, and the like. If you have reason to suspect that your child is being bullied, contact your child’s teacher and principal immediately. It is of the utmost importance that your child be protected, which means outlining specific plans to deal with different situations, establishing “safe” zones around the school, and better monitoring less-structured activities and situations where the harassment may take place. The Resources at the end of this book include a variety of programs that schools and parents can use to stop bullying and create a safe environment for all children. Many schools are already implementing such programs due to the recent rash of school violence (few of which involved students with ASD, but many of which did involve children who were being bullied or teased).
The typical bullied child is insecure, anxious, and socially “adrift,” with few friends or other supports. Children may also be teased because there is something different about them. This may well be the case with your child. In addition to the school-based solutions described above, you can help make your child more resistant to bullying by creating pride in the way he or she is different. A confident child is a difficult child to tease. Brent, a 10-year-old with ASD, was being taunted on the playground and called “virus boy” (due to his interest in viruses and bacteria). As his teacher later told it, Brent turned around and said, “Well, I like viruses because I have ASD and because I have ASD, I am much better at reading and video games than you.” Brent, incidentally, had been enrolled in a social skills group that had emphasized these special strengths of ASD. The bully was left speechless and walked away.
If unusual behaviors such as hand flapping, talking to himself, or making noises appear to be the primary cause of your child’s being teased, you might also try to help him or her become more aware of these behaviors and minimize their occurrence in public or when around peers. You might videotape your child and then point out instances of the behavior, teaching your child to identify the behavior reliably. As your child becomes aware of the behavior, you can institute a reward system (much like the self-management program described in Chapter 4) to decrease its occurrence. If the unusual behavior seems to serve a specific function, such as expressing excitement or alleviating boredom, more appropriate substitute behaviors can be taught—clapping instead of flapping or saying “Oh, yeah!” instead of making unusual noises—as discussed in Chapter 6.
Another way to help your child become aware of his or her differences, especially those that might lead to being teased, is through an explicit discussion about your child’s diagnosis. As parents, you can talk with your child about the basic features of ASD, emphasizing whenever possible their special strengths and uniquely positive aspects. This can lead to a discussion of the unusual behaviors associated with ASD and how they can put your child or teen at risk for teasing. A helpful metaphor in talking about ways people can stand out is that of gorillas and flamingos. “Gorillas” stand out because they display some highly noticeable negative behavior such as aggression and tantrums, while “flamingos” stand out because they are unique and interesting but different from others. To the extent that your child does not want to stand out, you can help him identify and learn to monitor the behaviors that make him like a gorilla or (more often) a flamingo, using the techniques just described. You and your child may also want to read personal accounts written by people with high-functioning ASD (such as Temple Grandin’s books) or watch movies featuring characters with ASD, to make the characteristics of the condition more tangible and easier for your child to identify. There are also two books that may be helpful in introducing your child to his ASD: I Am Special, by Peter Vermeulen, and Asperger’s: What Does It Mean to Me?, by Catherine Faherty (see the Resources section for more information). We discuss issues of self-esteem and self-identity further in the next chapter, which deals with issues specific to adolescents and adults.