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Lessons Learned- Tips for Parenting Children with Asperger Syndrome

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My son, Adam, was diagnosed with Asperger Syndrome in 1994 when he was sixteen. After twelve years of misdiagnoses, disappointments and uncertainty, this was a fairly new diagnosis, so there were few people or services to turn to for parenting advice. It didn’t take long before I realized that it would be up to me, more than anyone else, to help my son move forward in his life.

I wanted Adam to have hope for the future, be a productive member of society, have a job, and relationships with other people. I knew that society would not change to accommodate my son, so I had to help Adam fit in to this world.

There was a lot of work ahead if I was going to achieve these objectives and it wasn’t going to be easy. I was a full-time mental health crisis nurse and actively involved with my elderly parents living in another city. But as a mental health nurse, I knew that a positive attitude, optimism and good coping skills were essential for the long haul.

Over the years, I’ve kept record of practical strategies and interventions that were successful helping Adam become independent. I hope they can now help other children to modify their behaviors; reduce anxiety; problem solve; become more comfortable in social situations, and grow as human beings.

Attitude

I decided that I had to develop an attitude of hope and optimism and take one day at a time. I believed that each achievement, no matter how small, would accumulate and lead to positive outcomes, so I celebrated every one along the way. It did not matter to me how long it took to meet goals as long as we were moving forward. Above all, I knew it was important to keep my sense of humor—no matter how hard.

I ensured that I took care of myself, maintained an active social life, returned to the university and took advantage of getaways when possible. I exchanged babysitting weekends with friends so I could go and enjoy without worry. I asked friends and family for help when needed, and practiced gratitude for the blessings in my life.

Adam’s attitude and outlook was as important as mine. We practiced visualization together by daydreaming of possibilities for his future.

Role-play

One of the most successful tools I used with Adam was “role-play.” I cannot stress enough how important role-playing is. It can be a wonderful, fun form of communication between you and your child and result in problem-solving, improved interactions with others, and building your child’s self- confidence.

Even before he was diagnosed, I could see that Adam acted differently from other people in social situations. By the time he was eight, we began to role-play.

If Adam told me that something had gone wrong at school with “Johnny”, for instance, I would slip into a role-play game as part of the natural conversation we were having. I’d work back to recapture the situation. “Let’s pretend! You be Johnny! Show me what Johnny said and what he did!” Then I’d ask him to show me what he said or did.

If Johnny had hurt Adam’s feelings during the social mishap, I might start the role-play by playing Adam and saying something inappropriate just to provide us with a good laugh to start off. I’d say something like, “I really hate you and you are the worst person in the world, Johnny!” Adam would be shocked and tell me “You can’t say that!” Then I would say, “You are right—so let’s make up something that you could say.” We’d go over the whole situation together and carefully work through the interaction, step-by-step, trying things out, until Adam understood what had happened with Johnny, how he might have handled it differently or what he could have said. We would also discuss his hurt or angry feelings. If he needed to go back to Johnny to remedy the situation, we’d role-play that too.

Because we had so much fun with role-play, I used it to teach Adam how to handle situations in all aspects of his life. We’d role-play how to speak to a doctor or ask teachers questions in class. We’d rehearse taking a bus and asking the driver for directions. We’d practice calling a company about a problem with their product or registering for an after-school program. I always made sure we were having fun, no matter what we were focusing on.

We’d use role-play to look at all possibilities of social interactions, including negative ones. If someone he was pursuing as a friend said to him, “Don’t call me,” we’d work on how to respond to that. If someone said, “I hate you,” we’d work on that, too.

Inevitably, learning to handle personal and day-to-day situations through role-play encouraged Adam’s self-reliance and independence, thereby his self-esteem. We noticeably reduced his overall anxiety because he knew how he was going to handle real or anticipated situations. He welcomed it and it connected us in a joyful way.

Even today, at 36, Adam will come to me and say, “Listen to what happened to me with my boss.” We’ll go over the situation and work through it together, like before. It is also interesting to note that as an adult, Adam has developed a sophisticated ability to analyze situations. I believe role-play was a major contributing factor to that process of development.

Dealing with Social Situations

Parents have to do most of the work to enhance their child’s relationships. Realizing this, I made sure we had a social home so Adam could get used to interacting with people. We had guests for dinner every week, from 2 to 18 people at our table, ensuring an evening of lively conversation. Welcome people into your home. Start when the children are young by inviting other families for get-togethers.

They will reciprocate and your child will learn to have social interactions outside of the house. With your child’s input, also plan social activities at your house with another child, making arrangements through the parents. Stay close by (perhaps in an adjoining room) and be aware of verbal and non-verbal communications. Our children are concrete and often pedantic, so it may be necessary to facilitate interactions from time to time.

Many people are afraid to socialize, fearing their child will have emotional outbursts. Relieve your embarrassment by anticipating potential problems and preparing other people for your child’s behavior, whether you invite them to your home or go to theirs. Talk to them. “You know, my child has a problem … Feel free to speak to me if there’s an issue … or anything you want to know.” This type of openness helps them understand your child better and gives them license to talk to you during difficult situations. People welcome it when you give them suggestions for interacting with your child, at your home or theirs.

Anger and Violent Behavior

Angry outbursts are usually triggered by anxiety, frustration, and threats to the child’s self-esteem. If the child doesn’t know how to resolve or improve the situation, rages and violent behaviors may erupt. Try to identify potential triggers with your child. If possible, plan strategies to modify or avoid these situations altogether. Role-play is an excellent tool to use when your child is calm and willing. By exploring ways to speak or act appropriately during stress-producing thoughts or situations, your child can avoid aggressive behavior. Teach your child how to identify when anxiety or angry feelings are escalating and how to employ self-calming or exit strategies.

This will also result in an increased self-esteem as your child learns to control his or her behavior.

If violence erupts in your presence, STOP the behavior immediately. After a violent episode, take some breaths, calm down and plan how you are going to handle the aftermath. And remember: the violence lessens as our kids learn better ways to cope.

Restricted Interests

Turn restricted interests into strengths.

Adam had a strong interest in geography. When he was in school, I asked his teacher to use his interest in geography as a foundation to expand his knowledge in other ways. Although he couldn’t read from the curriculum’s reader, he COULD read the encyclopedia, so I asked her to find creative ways for him to excel through his special interests or skill, and thereby feel a sense of success. Adam also taught a geography lesson to his class, resulting in him being recognized as the expert in the subject.

Brag Alert: Adam now lives independently, sharing an apartment with a close friend. He has a full-time job, a girlfriend and an active social life. He has always worked and has travelled the world on his own. He continually self- reflects and tells me that he is now a happy person and proud of himself.


Fern Lee Quint, R.N., BA is a mental health nurse at the Urgent Care Crisis Clinic at North York General in Toronto. She also maintains a private consulting practice, working with individuals and families. She can be reached at fquint@rogers.com

Linda Rosenbaum is a freelance writer. Her recent memoir about raising her son with FASD, Not Exactly As Planned: The Making of a Family, is published by Demeter Press (www.demeterpress.org). She can be reached at lindarosenbaum@sympatico.ca

Acknowledgement

We are grateful for the North York General Hospital Foundation grant, which assisted us in writing this article.


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Comments

  1. Ellie Wyler says:

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    the difference in his behavior is 100% better.

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