'How to Be a Sister': Autism and hard-won love

Jeff Baker

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When Margaret Garvin was 3 years old, she was diagnosed with severe autism. Her sister Eileen was about to be born.

"Throughout the course of my life, I've only been certain of two things: I am the youngest of five children, and I am my sister Margaret's older sister," Eileen Garvin writes in "How to Be a Sister: A Love Story with a Twist of Autism." "Even though she was born three years earlier than I, I was the caretaker, the dependable one, and, as far as I can see, always will be. Instead of growing up in the protective shadow of my big sister, I often found myself dodging things she was throwing at me or chasing that shadow through a crowd of people as my big sister took off on some crazy escapade."

There are lots of books about autism, many of them excellent and many of those focused on autistic children. Garvin points out that autistic children become autistic adults, with different needs that can become more complicated over time. Her perspective, of an adult with an autistic sibling, is underrepresented and is one reason she wrote her book.

"I always wanted to write about Margaret," Garvin said. They grew up in a large Irish Catholic family in Spokane and dealt with Margaret's autism at a time when public education and social services for the developmentally disabled weren't legally mandated to the extent they are today. Margaret's issues -- inability to communicate or talking too loudly, outbursts of screaming and crying, and unpredictable, sometimes violent behavior -- stressed everyone in the family, parents and children alike.

"People often don't realize that the kids are going through the same things the parents are, and it affects siblings in the same ways," Garvin said.

Eileen Garvin moved away, first to Seattle for college and then elsewhere in the West. She now lives in Hood River with her husband, a physician, and works at Waucoma Bookstore. It's about five hours to Spokane, where Margaret lives in a group home their parents set up and where the state pays for 24-hour care. Margaret is 43 and "seems happier now, less stressed," said her sister, who is trying to get her a job.

Perhaps the most heartbreaking feeling for relatives of severely autistic people is when they can't connect emotionally to their loved one. People with severe autism often live in their own world and don't recognize or communicate with those closest to them. When they do communicate, it can be frustratingly inconsistent -- one day eye contact and something approaching a conversation, the next day nothing.

"That certainly is a struggle," Garvin said. "Margaret is a lot better at recognizing people. If you met her, you'd know if she liked you. She remembers who I am, but it's hard for me because we can't really talk."

Writing "How to Be a Sister" "inspired some wonderfully cathartic conversations" within the family, Eileen Garvin said. She's also been heartened by reaction from readers, not just siblings or parents of someone with disabilities but others who have a difficult relationship with a family member.

"The way I look at it is it's important to try to love them, even if it's hard," she said. "It's definitely made me more understanding of people as they are."

Original from Oregonlive.com