Life with Autism
“Over the years,” says Nathan Atherton, “I’ve developed this question: Is there really such a thing as normal? And if there is, who sets the boundary?”
Nathan has spent a lot of time thinking about the idea of “normal.” Partly, that’s because he’s 13 years old. What middle-school kid doesn’t worry about fitting in? But mostly it’s because Nathan has Asperger’s syndrome, a high-functioning form of the developmental disability called autism.
People with autism can have three kinds of symptoms: troubles with communication and language, difficulties with social interaction, and intense, unusual interests.
If you’re having a hard time picturing what all that means, you’re not alone. Autism is hard to pin down.
Dr. Martha Herbert is a pediatric neurologist at Massachusetts General Hospital and an assistant professor of neurology at Harvard Medical School. Part of her job involves studying autism.
“There’s a saying that when you’ve seen one person with autism, you’ve seen one person with autism,” Herbert says. “In other words, no two people with autism are alike, and the symptoms span a wide spectrum.” For that reason, autism is called a spectrum disorder.
Asperger’s syndrome is on the mild end of the autism spectrum. People with severe autism may never learn to speak or live on their own. But if you meet a person with Asperger’s syndrome—like Nathan—you might simply find him or her to be a bit quirky or just inattentive.
“Our Own Planet”
Sometimes people with Asperger’s are described as feeling like aliens from another planet, clueless about how to act in social situations and unable to understand the workings of earthlings’ minds. Nathan gets the comparison but sees things differently. “Me and some other Asperger’s kids think it’s just the opposite—that we have our own planet and other people have landed on it.”
The inhabitants of Planet Nathan get stressed out easily, have very particular interests that they love to talk about, prefer to stick to a set routine, and get upset when there’s too much sensory input, like loud noise or flashing lights.
“Sometimes I have trouble understanding what’s going on in other people’s minds, and I tend to have meltdowns,” Nathan says. The meltdowns are like little emotional explosions. “My most recent one, I was at school, and I took a deck of cards I had, slammed them down as hard as I could onto a table, and then stormed away.”
What sets Nathan off? Sometimes he doesn’t even remember. “Usually it’s anger, frustration, or stress,” he says. “It could be anything—from someone not listening to what I’m trying to say to not being able to find something that I’m looking for.”
That kind of difficulty in handling stress is a key problem for kids with Asperger’s syndrome. “Their nervous systems are set differently, and they’re easily overwhelmed,” Herbert says.
What makes Nathan think and act the way he does? The cause of autism-spectrum disorders is still unknown, but many scientists are currently researching the issue. Experts believe it results from abnormalities in brain structure and function caused by a combination of genetics and environment. “In people with autism, the structures of the brain communicate with each other in ways that are different from the brains of people without symptoms of autism,” Herbert says.
Though scientists have not identified particular autism genes, it’s clear autism has a hereditary aspect and can run in families. In fact, Nathan’s three siblings have all been diagnosed with autism-spectrum disorders. His younger brother and sister have severe autism, and his older brother has Asperger’s syndrome.
Nathan was diagnosed with Asperger’s when he was in fifth grade, after years of suffering meltdowns, tough times in school, and misunderstandings with other kids. When a therapist who had evaluated him told him he had Asperger’s, Nathan was relieved. “I was kind of like, ‘Well, at least I know that it’s something to do with how I was born, and not something that developed over time, that I could have controlled,” he says.
Since then, Nathan has worked on strategies to control the symptoms that bother him. He saw a family therapist who helped him understand his condition and learn social skills that didn’t come naturally. At his current school—Indian Hills Middle School in Prairie Village, Kansas—officials set up a special safety zone for Nathan, near the guidance counselor’s office, where he can go when he becomes overwhelmed. “It’s a little corner where no one will notice me,” Nathan says. “I get myself calmed down, and move on.”
Nathan struggles because of his Asperger’s, but he can’t imagine life without it. “I wouldn’t have it any other way,” he says. “Asperger’s has made me who I am.” In fact, Nathan sees some of his symptoms as strengths, particularly the tendency to cultivate strong interests. “I can really devote myself to doing things that I like because I have the ability to focus intensely,” he says.
But although Nathan isn’t looking for a cure, he does wish other people would be more sensitive to him and others with autism-spectrum disorders. “I’ve been taunted and teased all my life,” he says. “A lot of people think of me and my autism and don’t try to get to know me better. They can’t see past it.”
Nathan has had issues with teachers as well as kids. “Some teachers understand, but some of them just don’t get that I’m actually behaviorally really different—that when something is difficult or uncomfortable for me, I’m not just being stubborn,” he says. “Those teachers just really don’t want me in their class at all.”
Observe & Learn
Herbert says that she has learned an enormous amount from people with autism and believes that kids without the disorder can learn from those who have it. If you have a classmate with an autism-spectrum disorder, try to view the world from his or her point of view, Herbert advises. “They may see things in the world that you don’t notice,” she says. “They may have a different way of looking at things that’s fresh and beautiful and can really open your eyes.”