Tuesday, April 4, 2006

A Mind of His Own

A Mind of His Own
Cindy Heffron

My son's mind works differently than yours or mine. The reason is that he has Asperger's syndrome. Asperger's syndrome, or AS, is a neurological disorder that causes difficulties with communication and social interaction. It is often classified as a form of autism, although people with AS usually have average to above average intelligence.

My son (and only child) was finally diagnosed when he was 8 years old and I can remember telling my closest friend about it. Her response caught me off guard when she told me that she never expected me to have a normal child. She actually meant it as a compliment because I tend to live outside the mainstream to a certain extent. Maybe my friend knew that I would be better matched with a not so normal kid. In learning about AS, I found out that it is not politically correct to say "normal". In the Asperger community, they prefer the word neurotypical. No matter how you say it, all I know is that I wound up with a rather unusual child. Looking back over a journal I've kept, I found some examples of his unique perspective on the world.

AS has been called "the little professor syndrome" because children who have it often speak rather formally and have an extensive vocabulary. For instance, one night when my boy was 10, I was urging him to go to bed. He turned to me and said, "Mom, you don't realize that I possess the uncanny ability to stay up late and still get up early the next morning." Kind of hard to argue with that logic! People with AS are often ruled by logic. They also tend to think in concrete terms. Another night when I was tucking him in, my then 6 year old boy said that he was afraid to go to sleep because he might have a bad dream. I tried to reassure him by telling him to just ask his brain to give him a good dream. He looked at me like I was crazy and said. "I can't tell my brain what to do. My brain is already telling my tongue what to say." Ah, yes, his brain. The latest research shows abnormalities in the structure of the brains of people with Asperger's syndrome. These abnormalities have an impact on the neural circuits that control behavior and thought.

Sometimes it is fascinating to witness the way my son thinks. One day, when he was 10, we were riding in the car when he suddenly said, "The brain is the Washington, DC of the body." True enough, I guess, although there is no easy way for me to "lobby" his brain to make significant changes.

One of the most intriguing aspects of AS has to do with the theory of mind. The idea behind the theory is that most people have an innate ability to understand that their fellow humans will have thoughts and emotions that are different from theirs. For the average person, it is natural to imagine how another feels or thinks, even if he or she has not had a similar experience. For people with AS, this ability is decreased, or sometimes lacking altogether. They have many social difficulties because they can't automatically read body language, or have an easy sense of how to respond to people; especially people they don't know. They don't understand the reason for polite small talk, or the little white lies that are acceptable as long as they make someone else feel better. One year, for his birthday, my son received a gift that would have been more appropriate for a younger child. Fortunately, the gift-giver was not within earshot when my son opened the present and announced, "I have absolutely no interest at all in this." Now we have to rehearse how to just thank the person, although I'm not the best at faking it when I get a weird gift either.

Another time, I made the mistake of asking my always truthful boy if he thought I looked fat in the new shorts I was wearing. His answer: "Well, your skin isn't exactly glued to your bones." As for not being able to read non-verbal cues, there was another night when he kept stalling at bedtime. Finally, I had to raise my voice and tell him that I had tried to be patient with him, but that I had reached my limit. He started crying and said through his tears, "I didn't know you were being patient with me. I thought you were just reading your book." In fairness to him, how could he have known what patience looks like? My internal struggle to remain calm and composed is never visible. It is only the loss of control, the lack of tolerance and understanding that is unmistakable when it appears.

Another characteristic of AS is a narrow focus of interest. For some, it can be a fixation with something obscure like volcanoes, or orchids, or steam engines, and that is all they want to talk about. Fortunately, my son's passion is the movies, which is a topic that most people are interested in, although not to the extent that he is. While other boys his age are skateboarding or hanging out at the mall, my kid is sitting next to me at a matinee sharing the main thing we have in common; the desire to escape into imaginary worlds. He can list the Academy award winning movies from the past 50 years, as well as a lot of other film facts. He does this because facts are safe. Facts are solid and dependable. People with AS also seek the comfort and predictability of a regular routine. They focus on such a small part of this great big life because it gives them a sense of mastery and control.

My son is 14 now and he attends a private school for children with issues similar to his. In addition to the standard academic subjects, the staff works with them on social skills and emotional development. The other night he had a writing assignment from his counselor. One of the writing prompts began, "I feel good because...,.” My son wrote, "Because I have nothing to feel bad about." That is such a classic statement from him, as well as being a perfect description of his present state of mind.

As I write this, I can hear him upstairs singing to himself as he sits at his computer. For the moment, he is content with his place in the world. I worry about his future and how long I'll have to be his mother in the full sense of the word. But on days when I'm feeling more optimistic, I think of a quote by Christopher Morley: "There is only one success - to be able to spend your life in your own way." All I want for my son is for him to find that way.

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