Welcome to Sister on the Edge.
This blog examines autism from the periphery, so to speak. Like so many siblings of people with autism, autism was the dominating feature of my childhood and I grew up along side it.
Now that I am an adult, my role is changing. As my parents age, I, like so many brothers and sisters, have to think about the future and what responsibilities I face regarding my sister.
Autism is now a household word, though it was not so when my sister and I were kids. People called Margaret retarded, badly behaved or just plain weird. As her little sister, I was weird right along with her, but I got used to it because my family has a pretty strange sense of humor.
Autism is now mainstream thanks to the progress of science, education and medicine as well as support systems for children with autism and their families.
Margaret has benefited from some of that. If my sister had been born in an earlier decade, she would likely have been institutionalized and missed out on the benefits of growing up at home with the rest of us.
Which brings me to the point of this blog: the impact on sibling of adults with autism.
An estimated 1.5 million Americans have autism. Nobody has counted their siblings, but one expert estimates that the number is at least equal. When they become adults, and as their parents age, siblings of people with autism are faced with serious questions about their brothers and sisters, and issues that can intiate enormous changes in their own lives:
Will my sibling move in with me? Will my sibling live in a group home? Where will he work? What is my role in her life? How will all of this affect my future, my job, my marriage, my kids? What will happen to my sibling as I age or get sick?
These are just some of the questions that come up. And these questions last a lifetime.
Don Meyer, director of the Sibling Support Project in Seattle, says it best: "Brothers and sisters have many if not most of the same issues that parents have and they are going to have those issues for a longer period of time than even parents will. This is a relationship easily in excess of 65 years."
"The impact of having a sibling with autism never ends," says Dr. Sandra Harris, author of Siblings of Children with Autism.
As this generation of Americans with autism has reached adulthood, so have their siblings, and yet support systems for brothers and sisters are scarce.
With Sister on the Edge, I hope to illuminate autism from a sibling's point of view.
If you have a question or comment, I'd love to hear from you.
