My daughter, Emily, is an eight-year-old second grader who was recently diagnosed with Asperger’s Syndrome (AS). I’ve always known that Emily is a unique little girl, but I had no idea she might be on the spectrum. I was thrilled that Emily was reading by age four, but curious that she only read material about “bees.” She has virtually no interest in making friends and prefers to stay at home on the computer or with her face in a book (about bees, of course!). When my husband and I learned of her diagnosis, we wasted no time in researching local services for Emily and have already signed her up for pragmatic speech therapy, social skills training, occupational therapy, and after-school tutoring. We both feel very strongly that the more we can give Emily in the way of services, the more quickly Emily will develop socially, emotionally, and intellectually. However, we are concerned that all of this outside therapy will negatively impact Emily’s self-esteem . We don’t want Emily to think that we bring her to all of these appointments because there is something ‘wrong’ with her. We want her to know that we love her just the way she is. How can we help her understand that we’re trying to give her tools so she can succeed and be happy in life, and in the process develop a positive sense of herself as she develops and grows?
Emily’s Concerned Parents
Dear Concerned Parents,
Being a parent is an enormous responsibility. Being the parent of an Asperger’s child is not only an enormous responsibility, but also one that requires you to develop a whole new set of parenting strategies and techniques that will, in all honesty, feel unfamiliar to you at first. The old tried and true methods that were so successful with neurotypical siblings need to be replaced with a new set of parenting skills based on an understanding of and respect for the very different thinking patterns, perspectives and learning styles that are part and parcel of the Asperger’s child.
Receiving the unexpected news that Emily has AS must have been difficult for you and your husband to hear. Although I know your impulse is to jump right into action in an effort to get Emily the help she needs, I caution you against moving too quickly. You and your husband deserve the time and emotional reserve to allow this information to sink in, and, perhaps, to mourn the loss of the child you may have thought you had. Before you embark on the journey to help her, it’s important for you first to accept your child’s unique qualities and let go of any unrealistic expectations you may have of her. This doesn’t mean you discontinue all outside services in an effort to “accept her for who she is,” but it may mean that you reevaluate how many services you provide her at one time. I often tell parents that the shotgun approach to professional help is not going to help a child progress faster. On the contrary, running around to service providers may be stressful to both you and your child. This is counterproductive to her growth process. Take some time to prioritize and limit Emily’s after school appointments. For instance, you may want to begin with pragmatic speech work and then add a social skills training component after Emily shows increased communication competence. This will give her a better chance of connecting with her peers in the social environment.
Much research has been published in recent years stressing the importance of high self-esteem to a child’s emotional and social development. Check out your local bookstore and you’ll find many books on this topic. You, like most loving parents, know how important self-esteem is to Emily, but you may be less clear on what you can do to help her feel good about herself. As a therapist who has been running social skills training groups with children for over fifteen years, my orientation is biased toward group work with children on the spectrum. Social skills groups for children with AS can be challenging but also extremely rewarding on so many different levels. For many children, a social skills group may be the first place they’ve ever felt safe and understood by peers. Parents of these children bemoan their child’s years of hardship with peers. They describe their children as socially isolated and ignored at best. Sometimes, these children are socially abused and ridiculed at school and in extracurricular settings. The children may be aware of being “different” from their classmates, but helpless to make the changes necessary to lead a satisfying social life. These social experiences affect their self-esteem dramatically. Likewise, a safe group experience can boost a child’s self-esteem almost immediately. When children experience social competence, they show more confidence in arenas outside the therapeutic environment. With their newfound self-esteem, children begin to take risks with peers they would not have previously attempted. Prior to a group experience, one group member sat alone at lunch. After participating in a group for a short time, she began to sit at a table with other children.
Emily is only eight now, but she may become increasingly aware of her differences from others over the next few years. Girls with AS are especially vulnerable to feeling left out. The negative experiences Emily has with others may put her at risk for low self-esteem, which causes children on the spectrum to isolate further from the world. A social skills group will allow her to express feelings and idiosyncratic ideas freely without judgment from her peers. Because similarity and common interests are essential hallmarks of friendship, she will begin to acquire the necessary competencies to develop true friendships. Together, group members experience a profound feeling of being understood. This feeling, in my experience, translates to increased comfort in the world. The boost in self-esteem creates a productive cycle where learning can take place and skills can be practiced.
As a parent, you cannot control the complex temperament and singular qualities that Emily was born with, but you can make sure that you create an atmosphere at home, with peers, and in your family life where she can flourish. The following steps will help you create a safe and nurturing environment in which Emily can develop high self-esteem. Remember: you know Emily better than anyone. Keep your knowledge of her in mind when you practice these techniques.
Step One: Help Emily Build Relationships with Peers
Improved peer relationships lead directly to high self-esteem, and it is never too early to focus energy on helping Emily develop friendships. She may not be interested in her peers now, but as she moves into adolescence, she will be. You will want her to have basic social interaction skills under her belt before she hits adolescence when peer pressures increase exponentially. Be clear that what we are talking about here is acquiring social skills, not emotional relatedness. They are very different aspects of social interaction. Emily needs to know the social ‘niceties’ – saying ‘please’ and ‘thank you’, not interrupting or being a ‘space invader’, sharing, turn taking, etc. These social skills allow a child to gain entry into social relationships. Emotional relatedness, on the other hand, is that intangible sense of connectedness that is hard to define and even harder to teach. Concentrate on social skills for now.
In addition, it is important to help Emily build appropriatesocial networks early on so that later she makes good social choices. Begin by setting up play dates for her. Emily may not be able to play with peers for several hours. It’s too much time for her to negotiate the complicated interactions of play and/or communication. Keep the play dates short, perhaps just 20 minutes at first, focused on an activity that interests everyone involved. If you are worried about peer rejection, asking a friend to an enticing activity lessens the likelihood that rejection will take place. Set limits on the time Emily can spend playing computer/video games by herself so she has some time for “free play.” Prior to a play date, you may want to review the social rules. For instance, remind Emily that the guest gets to choose what she wants to play with and that the topic of bees, for example, is off limits for the play date. Remove all toys that Emily does not want to share prior to the play date. If she is made aware of behavioral expectations in advance of the situation, Emily will feel more a part of the decision-making process, which in itself is self-esteem building.
Step Two: Encourage Areas of Competence (To a Point)
A child with AS may develop a particular area of interest to the exclusion of others. The indulgence in Emily’s fascination with bees, for instance, offers her enjoyment, a sense of mastery, and a topic to talk about with peers and adults. In addition, the topic may help her manage social anxiety she feels around peers. The problem for many families of children with AS is that the expertise comes at a cost. You may be happy that Emily has found an area that helps her feel like an expert, but it may drive you crazy to have to listen to her talk about the topic incessantly. Rather than cutting her off from her interest entirely, start setting some boundaries that limit the time she spends on the subject of bees. Timers can be helpful in signaling the end of an activity and the beginning of another one and visual tools like this are highly effective with AS children. You may want to create a secret code word or gesture with your child that inconspicuously alerts her to change the subject. While Emily is getting used to these limits, make sure you set the stage for success by offering her another enjoyable activity she feels comfortable and confident performing before you set the timer.
Step Three: Promote Physical Activity and Healthy Nutrition
Regardless of Emily’s particular area of competence, physical activity should be part of her normal daily regime. Like many children with AS, Emily may have motor skill challenges that result in her avoiding activities that involve a ball, running, or that require balance such as riding a bike. You may need to be creative in discovering physical activities she enjoys. Our group members have enjoyed horseback riding, martial arts, jumping on a trampoline, or swimming. Do not give her a choice about this issue. She may choose the activity, but her participation is mandatory. In addition, make sure she eats a balanced, healthy diet. Making healthy life choices translates into high self-esteem.
Step Four: Use Praise and Discipline Effectively
Understanding Emily’s newly diagnosed condition does not mean that you do away with appropriate discipline. The operative word is ‘appropriate.’ Continue to set clear limits with Emily. Make sure when you give her a direction that a) she understands it (check for comprehensions) and b) you mean it. Say the command clearly and firmly, and impose an immediate consequence if the command is not followed. For instance, you may say, “You are dressed for school. Now, you must brush your hair.” If the direction is not followed, say, “You have not done what I asked. For each minute I wait for you to brush your hair, you will lose a minute of screen time this afternoon.” Praise needs to be immediate as well. Be specific – and honest – with your praise. For instance, “Emily, I like that you immediately went to your room to brush your hair when I asked you.” Kids know when you’re being insincere with praise, so do be genuine.
Step Five: Help Your Child Learn From Mistakes
Children with low self-esteem are terribly afraid of making mistakes, and this fear makes it very difficult for them to take chances. This is especially true for a child with autism. One mistake is just as enormous as the next in the mind of the spectrum child. Lacking the ability to see themselves through others’ eyes heightens the struggle to differentiate between small and large mistakes. If Emily sees all of her mistakes as HUGE, she may choose to retreat into her own world rather than face possible failure outside of it. You can help her get over her fear of failure, but it will take time and patience. Make sure that you react calmly to your own mistakes as well as hers. Show her alternative behaviors that make amends for the mistakes that she makes. Continue to encourage her to take risks and praise her efforts to do so.
Step Six: Encourage Positive Self-Talk
When Emily is experiencing an emotional situation, the thoughts that go through her head can be either helpful by urging her forward, or hurtful by holding her back. A child who says negative things to herself is not going to soothe herself; rather, her words will stir her to new heights of anger or depression. Openly communication with Emily about various feelings she may be experiencing and the self-talk associated with those feelings. Give her new language to soothe herself in difficult times. Instead of “I hate myself” or “I can’t do this,” help her think and say, “I’m mad but I can handle this.” Or “I can do this.”
Finding opportunities to boost Emily’s self-esteem will be an ongoing activity for you and your husband. Remember: Emily is a child first. She came into the world with a unique temperament all her own. In addition to who she is as a person, Emily also has a condition called Asperger’s Syndrome. It affects how she perceives her world, but it is not the sum total of who she is. Her personality is constantly interacting with outside forces. Teachers, grandparents, peers, and siblings all affect her self-esteem. As a parent, you cannot completely control who interacts with Emily or how her self-esteem will ultimately develop, but you can create a safe, nurturing home where Emily’s uniqueness can unfold. You may find yourselves feeling simultaneously discouraged, frustrated, hopeful, challenged, and enlightened with her growth and development. Emily will show you over time her unique talents and abilities. It is clear from your letter that you love Emily. By appreciating and validating who she is and helping her achieve her goals, you insure Emily’s happiness and healthy self-esteem.