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 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 his or her social behavior even when he or she is not within the four walls of the clinic or school, with a trained professional there to assist him. 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 autism spectrum disorders specialist.
Parents and siblings can be valuable role models for the child with AS-HFA. 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 or she is doing well (or even doing okay) and gently provide guidance in behaviors where he or she 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 AS-HFA 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, if you have a camcorder, 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 AS-HFA 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 autism, who wondered about her sexual attraction to a classmate, suddenly began to explore this attraction aloud in the lunchroom. Many of her classmates felt "weirded out" by 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 AS-HFA 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 or her 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 or her 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 AS-HFA. 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 situa tions? We have seen several children with high-functioning autism and Asperger syndrome prosper in drama groups.
Although they may not be an adequate substitute for face-to-face social interaction, Internet chat rooms provide an excellent forum for mature older children, adolescents, and adults with AS-HFA to develop friendships and practice conversation. The anonymity associated with them and the absence of face-to-face contact can reduce anxiety in young people with AS-HFA, and the fact that many are organized around a common and explicit interest can be beneficial. In addition to enabling your child to practice conversation, chat rooms give him or her a chance to observe the conversations of others to provide models of social interchange. Internet chat rooms can also provide a sounding board for getting feedback on or normalizing "real world" social experiences and misadventures. There are also Internet chat rooms, such as #Autfriends (autfriends.autistics.org), specifically for people with autism spectrum disorders and those who care about them. Keep in mind that one downside of the anonymity of chat rooms is that little is known about the individuals with whom your child interacts. Therefore, you should be involved in friendships that develop in these forums and make the potential dangers of sharing personal information clear to your child.
If the situation is structured appropriately, parents can help guide younger children with AS-HFA 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 teaching and structure to have a successful playdate. Squabbles and difficulties sharing and accommodating to others are part and parcel of children's social development.
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 AS-HFA, 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 autism or Asperger syndrome learn (using written cues or other visual structure, for example). Given their typically good memory skills, children with AS-HFA 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.) "Okay, 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. 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 him to use them in public. Videotaping and reviewing the scripted interaction can again be extremely helpful.
Stine Levy, a behavioral and educational consultant from Indiana, has developed a game to teach a variety of social skills to children with AS-HFA. This game is fairly easy for parents to adapt or construct at home. Using a game board similar to Candy Land or Monopoly, mark out spaces along a path and use color-coded cards to advance through the game. Different-colored cards require the players to do different things, including practice their social skills. For example, blue cards might indicate something fun to do ("Make a silly face," "Jump up and down twice," or "Pat your head while rubbing your stomach"). Yellow cards might be used for surprise twists in the game's rules ("Take another turn" or "Go back two spaces"). Green cards could be related to your child's special interest ("Name five planets" or "What is the capital of Kuwait?") or other fun topics ("What is your favorite TV show?" or
"Who do you know who has a pet dog?"). One color, perhaps red, is at the heart of the game and requires the child to perform some kind of social skill or make a social judgment (for example, "You want to watch a video, but your mom says no. What should you do?" or "You see a classmate at the grocery store who says hi. What could you say back?" or "Name two things you can do if someone teases you" or "Ask another player how his or her day was"). Red cards allow children to learn and practice social routines and scripts. The child's answers to the social questions on red cards can be written down in a notebook for later review. Prompting of more effective or acceptable strategies can be given when needed, thus providing another way to teach social skills that makes use of visual skills and structure, while also being fun.
Social Stories 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 in the Appendix 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 or she 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 AS-HFA—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 autism spectrum disorders.
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 Appendix for additional resources 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.
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 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.
Tracy, who has high-functioning autism 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 tantrummed 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.
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 as a prompt or reminder. Social Stories can be written on index cards and taped to a child's desk to remind him or her of appropriate social behaviors in the classroom (raising hand, waiting in line, handling a change in class schedule, and so on). Many children keep their Social Stories organized in a notebook and enjoy rereading them with family or saving ones they no longer need as evidence of the progress they are making.
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 AS-HFA. 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 Asperger's Syndrome: A Guide for Parents and Professionals, 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 him or 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.
LIVING WITH ASPERGER SYNDROME AND HIGH-FUNCTIONING AUTISM 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" (non-AS-HFA) children of the same age interact in a more natural setting with children or teens who have AS-HFA . Just placing them in proximity to each other won't be enough (if your child is in any regular education classes, then this is 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 AS-HFA. 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). Pioneers of this approach were researchers and special educators Drs. Strain, Odom, and Goldstein (see the Appendix for references).
In one peer-mediated approach, all children in an elementary school classroom (that happened to contain a child with AS-HFA) were taught "buddy skills," which included staying near the assigned partner, playing with him or her, and talking to the buddy. During "buddy time" (usually free play or recess) they were paired with another child in the class and taught to "stay, play, and talk" (for details of this and similar approaches and specific training regimens, see the Laushey and Heflin reference in the Appendix). Each day, the buddy pairs were rotated systematically, so that all children were paired with the child with Asperger syndrome or high-functioning autism, promoting generalization of the social skills across many individuals.
Dr. Catherine Lord, a researcher at the University of Michigan, has adapted some of these principles for use with older children and adolescents with AS-HFA (see the Appendix). She gives peers several simple guidelines for interacting with the person with high-functioning autism or Asperger syndrome, such as staying near them, joining their activity, making comments, praising them for even small interactive behaviors, and being persistent. General information about autism is shared with the typical peers. Possible situations (for example, the child with AS-HFA 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 AS-HFA, but instead lets the peers behave and interact with them. The therapists remain present to support, encourage, and protect the child with AS-HFA when necessary, but try to deliver the treatment through the typical peers, effectively eliminating themselves as the "middle man."
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 AS-HFA 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 they 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 AS-HFA. 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 AS-HFA. These volunteers are given a variety of assignments, from greeting the child when he enters the class, to engaging him in play or conversation on the playground, to sitting with him 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 autism, 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 AS-HFA 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 Asperger syndrome. 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 Jazz 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 to 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.
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