How to Be a Sister by Eileen Garvin (icecream ebook reader .TXT) 📗

on a musical with local kids—all with autism, including her son. The subtext of the movie, though, was the fierce hope and despair of the parents, the unending conflict that autism brought to their families, their marriages, and, of course, their children. Elaine killed me; her face was so full of hope. Her first husband had left. After many years of raising her son, Neal, alone, she’d met someone and become engaged. Now she and her fiancé together defended Neal from the criticism of the fiancé’s family, who thought he was just “a bad boy.” We had relatives like that, too, who thought my sister just needed “a good crack on the ass.”

At one point in the movie, after all of their defending him, Neal did something rotten to a toddler at a picnic, the kind of thing I’d seen Margaret do. Pretending he was going to be nice, he yanked a little boy over by his arm and made him cry. And then the adults were sucked into this vortex of conflict—the toddler’s mom, who was trying to trust Neal’s mom; Elaine and her boyfriend, who knew he could act better; the little kid, who didn’t understand why he had been set up for a sucker punch. And Neal, who couldn’t explain why he had done what he did and cried and cried. It was clear that more than the picnic had been ruined. It was just one more tear in the social fabric, the emotional fibers, and the invisible bonds that held these people together.

Watching their stories, I felt like I was at a family reunion, only everyone was so much better looking than me and my relatives, because the movie was filmed in California.

When the lights went up, I stood up, wiping my eyes with my sleeve. Suddenly I realized I was not alone. There was another woman sitting in the back of the dark theater, also by herself, sniffling into a Kleenex. I felt like I should say something. After all, if she was there watching the film, we must be in this together, right? But words failed me, so I just smiled at her and she smiled back, and I walked out of the dim auditorium into the weak autumn sunlight.

AUTISM IS A neurological disorder people are born with that impairs communication and social interaction. The Autism Society of America (ASA) describes it this way: “Autism is a complex developmental disability that typically appears during the first three years of life and affects an individual’s ability to communicate and interact with others.”

The ASA estimates that as many as 1.5 million adults and children have autism today, and that number is sky-rocketing. The Centers for Disease Control and Prevention reported in 2009 that autism affects one in every one hundred children. When Margaret was born, researchers thought it was more like one in every ten thousand births. Autism crosses all racial, ethnic, and socioeconomic lines and is four times more likely to affect boys than girls. Most children, like my sister, are diagnosed around the age of three.

A national advocacy group, Autism Speaks, makes the prognosis very clear on its Web site: “Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure.”

Autism is not something people outgrow, although depending on the severity of the disorder, people can learn strategies to deal with their symptoms. The most famous autistic person today is probably Temple Grandin, who still struggles with her disorder but has used her doctorate in animal science to become a professor, an award-winning designer of humane cattle yards, and the author of many books. She has also used her scientist’s mind to teach herself appropriate social interaction, which was completely foreign to her.

Other people with autism, however, never learn to speak at all. Many, like my sister, will never be able to live without a vigilant staff to help them, because they simply don’t have the life skills they need to complete the basic activities of daily living on their own—grocery shopping, bill paying, cooking, cleaning, and driving.

Although autism is a spectrum disorder, meaning it affects people in different ways, people with autism demonstrate a number of common characteristics. The ASA and other organizations identify the following among the well known: insistence on sameness, resistance to change, difficulty expressing needs, and repeating words or phrases in place of normal, responsive language. Other behaviors include laughing, crying, showing distress for reasons not apparent to others, and preferring to be alone. Tantrums are another, as well as lack of eye contact, sustained odd play, spinning, and inappropriate attachment to objects. Margaret did all of the above when we were children and retains some of those behaviors as an adult. She has also shown apparent over-sensitivity or undersensitivity to pain and no real fear of danger, which are other characteristics.

While Margaret has severe autism and much of the difficult behavior that came with it, she has always shown a capacity for learning new things and for taking on more normal behavior. She outgrew many of her bizarre childhood compulsions that plagued our daily life, like smelling babies’ heads in church on the way back from communion. Or stopping in a crowd to run her finger up the back of a woman’s leg if she happened to be wearing pantyhose. Although she is still withdrawn at times, she no longer disregards the presence of other people so completely as she did when we were younger. She tends to greet people when she enters a room, sometimes enthusiastically, sometimes quietly. She makes eye contact and responds, as well as she can, to what people are saying to her, depending on her mood. She avoids interaction if she is stressed and sometimes tries to shut us out with music or rocking or tearing a piece of paper into tiny pieces. These ways of coping, while a bit odd, are certainly more benign than some of the things the rest of us