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Monday, May 15, 2017

My brother’s sister

My middle brother, Jacob, was diagnosed when we returned to the US from a year-long family sabbatical during his third-grade year. My parents gave me and my youngest brother, Daniel, who had just finished first grade, a small paperback book to read (Can I tell you about Asperger Syndrome?: A guide for friends and family). It was their way of explaining why Jacob suddenly had so many doctor’s appointments and pills. I don’t remember reading the illustrated paperback, but I do remember much of what it taught me. Asperger’s syndrome is a disorder on the autism spectrum although it is no longer separately diagnosed. People with Asperger’s, while often especially talented in specific areas, struggle to interpret social signals.

Although I knew this growing up, it didn’t stop me from being sarcastic, which often confused  Jacob (although now he’s learned to be sarcastic too). Aspies, or people with Asperger’s, often feel uncomfortable making eye contact with people, and can have sensory issues, which, in Jacob’s case, means that he is overwhelmed by large groups of people and loud, noisy places. Often Aspies’ arm, hand, and shoulder muscles are weaker. After his diagnosis, Jacob had to do strengthening exercises for his fingers and arms: writing with a vibrating pen, army crawling, playing with putty. Aspies also sometimes forget that others might not always share their special interests. I remember three-year-old Jacob talking for hours to no one in particular about trains. At age six, every conversation had to be about unicycles, his newfound passion. Now sixteen, he talks nonstop about rowing when given even the slightest opportunity.

But while the book does describe many of Jacob’s peculiarities, it doesn’t mention his tantrums. “You are acting like a two-year-old” is my mom’s favorite phrase when Jacob has a tantrum. When a five-year-old throws a tantrum, you assume they are just being a kid. When a third-grader throws tantrums while spending a year in a foreign country, you assume it is the bullying and the culture shock. When a fourth-grader throws tantrums at home, you get a diagnosis—Asperger’s. But the label doesn’t make it any better. When a 6’2” fifteen-year-old who’s been trained as a rower for three years throws a tantrum, it’s scary. You prepare for the bruises.

Read more here.