The Garvin family has five kids. Eileen is the youngest.

The Garvin family has five kids. Eileen is the youngest.

ABOUT THE BOOK

Cameras clicked and flashed as my big brother and his new bride cut the cake. All eyes were on the newlyweds, or so I’d like to believe. Perhaps I was the only one who noticed that my sister, edging up close to the bride and groom to secure her place in the cake line, had the hem of her dress tucked down the front of her pantyhose. And I don’t mean my little sister. I’m talking about my big sister. My sturdy, 180-pound sister. The one with autism. The one with the cake obsession, who, in the middle of this particular Kodak moment, couldn’t be dragged by wild horses to the bathroom to fix her dress.

Growing up with Margaret was never easy. As her sibling, I constantly found myself thrown into awkward social situations like this one. But that was part of my life back then and I didn’t question my role, no matter how bizarre things got. I loved my sister and couldn’t imagine life without her. Now that we were adults, though, things just kept getting harder and weirder. I was starting to have questions that had no apparent answers. What was I supposed to do about the pantyhose situation for example? More broadly, what was our relationship supposed to be like? Just how was I supposed to have a relationship with someone who can’t drive, fly, write letters, send email, or talk on the phone?

When I lived 1,600 miles away, such questions had nagged me, but I only had to confront them when I was home to visit. A recent move brought me back to the Pacific Northwest and face to face with the question that had dogged me for decades: “Just what are you going to do about Margaret, anyway?”

When I started looking for answers, resources were hard to find. Although the last three decades have seen an explosion of writing about autism, there is almost no information for adult siblings of people with this disorder. I read books by parents, educators, therapists and high-functioning adults with autism. I found a couple of books written by adult siblings of people with autism, and neither one addressed the question of adult relationships. So I stopped reading and I started writing as I tried to reconnect with Margaret. The writing turned into this book — How to be a Sister: A Love Story With a Twist of Autism.

When my sister was diagnosed  in 1970, medical experts estimated that 1 on every 10,000 children born was affected by autism. In 2009 the Centers for Disease Control and prevention reported that that number is now 1 in every 100 births. With the escalation of this life-long condition, resources for siblings are needed now more than ever. The 1.5 million autistic Americans have millions of siblings who struggle with the same issues I do — the embarrassment, the hilarity, and the strangeness of having such an unpredictable family member. Adult siblings need resources and support as our parents age and responsibility for our brothers and sisters shifts to us.

How to be a Sister aims to fill this void as I recount the hilarious, heartbreaking and sometimes excruciating moments in forging an adult relationship with Margaret. How to be a Sister recounts my journey to the heart of family and compulsion as I try to learn, simply, how to be a sister. I hope this book will be a resource for siblings, parents, friends, teachers and therapists of people with autism or any other difficult, lifelong disorder. I believe it will entertain, comfort and inspire millions of families. For anyone interested in the human experience, How to be a Sister: A Love Story With a Twist of Autism reveals a bewildering and beautiful world that will dismantle regular notions of normalcy, family and acceptance.

— Eileen Garvin

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