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Living with Asperger's Syndrome: A sister's story

Alyson McNutt English is a freelance writer and photographer from Mississippi. Find out more about her on her website!

Piecing together a puzzling disorder

When I was about nine years old, my parents got me the original Nintendo for Christmas. As my sister and I ran upstairs to our shared room to hook it up, my little brother, only two years old at the time, followed close behind. That evening, we entered the world of Mario and Luigi, King Koopa and Princess Toadstool and were entranced.

It wasn't too surprising that my baby brother (shown below, sitting in my lap, about 20 years ago) also became enchanted with the games. But we soon realized that his "interest" had become obsession. He talked constantly about Mario and Luigi. He watched the Super Mario Brothers Super Show every day and would write stories about the characters. And at the tender age of two, he was playing the video game whenever we would let him.

It wasn't just that he "loved" it -- he was obsessed with it. And that wasn't the only thing: he also had social difficulties, was rather clumsy, and had basic issues carrying on a logical conversation.

"So what is wrong with him?"

To us, it didn't make any sense. Back then, it made little sense to doctors either. My family took my brother to specialist after specialist, but no one gave us a diagnosis that made sense. Then, one day I read about a form of autism that wouldn't show itself by hand flapping and lack of speech. Rather, its set of indicators was more fluid, less defined, but still allowed the firm diagnosis my family had never received.

I now believe my brother suffers from this form of autism, called Asperger's Syndrome (AS).

"He'd rather build a robot than play tag"

Although Asperger's Syndrome-affected kids look just like all the other kids in class and, in its most mild form, may simply be seen as "weird," AS is related to autism. Social integration, while not totally absent, is often extremely problematic.

Asperger's-affected children also possess an encyclopedic knowledge of certain subjects that is far beyond that of other children their age. They may not be able to carry on a conversation, but they can tell you all about their obsession of choice, be it aerodynamics, computer programming, animals, or any other topic you can dream up. Even Super Mario Brothers.

Social interaction, for many AS kids, can also be something that just gets in the way of them doing what they want to do. Missy Feldhaus has two children with AS, a girl and a boy. She says that one of the most difficult things for others to grasp about kids with AS is something commonly called the "little professor syndrome."

"These kids can be so bright that other kids, and adults, just don't understand them," Feldhaus says. "My son preferred to build a robot during recess than play tag. He enjoyed it, but it didn't do much for his social life."

A complicated diagnosis

Difficulty in social situations and extreme interest in and knowledge of one narrowly focused interest are not the only symptoms of Asperger's, a variant of autism. AS kids may also have difficulty expressing themselves verbally. While autistic children may not speak at all, "Aspies" may talk a lot, using words and sentence structure that seem overly formal, and they may have difficulty understanding the meaning of what others say to them. Children with Asperger's may also seem clumsy and have difficulties with some motor skills.

Another trait some children with Asperger's deal with is the inability to handle abstract thought. They may only understand the concrete meaning of written or spoken language and can have difficulty "reading between the lines." This is not true in all cases of AS, but it can be strange to hear a child recite the American presidents forwards and backwards, be able to tell you their dates of birth and death, and not be able to answer who their favorite president is and why.

Feldhaus, the mother of two children with AS, says that as with most any disorder, there are those who want to make a diagnosis cut-and-dry, but that Asperger's is far more complicated than that will allow.

"Just like anything else, there are varying degrees of Asperger's and very few 'classic textbook' cases," Feldhaus says. "Humor is something Aspies are said to not have, as well as any type of social skills" although some AS kids possess these skills. "While they do socialize, they don't understand what is appropriate and inappropriate. Interrupting conversations to talk about what they want to talk about is 'normal' for them. Some are very rigid with routines and some are not," she continues.

Feldhaus says that one of the most difficult things to deal with for her has been other people "blaming" her for her kids' behaviors. "When we go out in public we pray it goes smoothly but at any given time something could set them off," she says. "This throws them into a full blown meltdown that goes above and beyond your typical temper tantrum."

NEXT: Signs and symptoms of Asperger's, resources for you, and the perfect gift for my brother

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