Published on: April 21, 2016

Growing up with a twin sister with Autism has been both a blessing and a challenge. Not many people can say that their first memory is that they thought everyone had a twin with special needs or that they were motivated to learn to read by the age of three because their twin somehow already knew how (nothing wrong with a little friendly competition). While growing up, I was mildly aware of the struggles my parents faced having a child with autism but I mostly was oblivious to it all. I always viewed my sister as having a friend to play with anytime I wanted and someone to blame things on when I was about to get in trouble.

My parents struggled a lot with my sister’s diagnosis early on. In the 80’s, autism wasn’t as widely known as it is now. My sister’s first diagnosis was mental retardation, which I think was the go-to diagnosis at the time. Of course my parents weren’t having it, and rightfully so. Cynthia could read and she was only 3 there was no way she had mental retardation. However, she was withdrawn, still wasn’t potty trained, had a lot of strange rituals, and never slept, My parents went to specialist after specialist sometimes staying places overnight (which meant I got to stay at my friend’s houses … party!) to figure out what was happening to their child. Finally, when my sister was 4 she was diagnosed with autism.

My parents were sad but relieved that they finally had an answer to what was going on. I remember tying explain to my friends what autism was which was always difficult, even now I don’t exactly know how to explain it since every person with autism is different. I’ve always felt like it was my job to protect my sister, I’ve gotten into more fights then I’d like to admit over someone saying the wrong thing about my sister or looking at us funny. I am a pretty easy going person until someone says something rude about a person with disabilities.

Sadly my parents passed away when my sister and I were young, my father passed away when we were 17 and my mom when we were 22. Since then Cynthia has been living with me. It is a weird feeling when you go from being in college with little responsibility to basically having a child over night. I have always been involved in my sister’s life but it’s a completely different thing when you are the one who is responsible for another persons well being.

Most people think I’m crazy or ask me if it’s difficult having such a big responsibility. Or, my personal favorite, why not just put her in a home? Honestly, having Cindy in my life is just what’s normal to me. Shortly after my mother passed away my sister did live in a group home for about 6 months while I finished college. It wasn’t bad but I always felt uneasy about who was taking care of my sister or if they were bringing strange people in the house. I was always concerned about my sister and she wouldn’t be able or know to tell me if something happened. Shortly after I graduated from college I decided to take her out of the group home and have her live with me. Overall, I think this was the best decision. I know my sister is safe and taken care of.

It does get stressful at times. My sister doesn’t receive any extra services or respite so it can be difficult finding time to take her to all of her appointments or stay home with her when she is sick. Trying to find balance in my own life while still taking care of my sister is a challenge. I am very quick to put her needs before mine but I do burn out over time. Sometimes I have to make myself step back and reevaluate things to make sure I am taking care of myself too. Even if that means I have to lock myself in the bathroom for 5 minutes to have a few minutes of quiet time, then that’s what I do. I am also lucky to have a kind and understanding husband who helps me with my sister as much as he can. He is always there no matter how difficult things get sometimes.

We are lucky that Cynthia is independent with most basic life skills. It was a long process getting her to where she is today but Cindy is able to get herself dressed, does a great job with her hygiene, and even does her own laundry. She can cook meals in the microwave, even though we usually have dinner together. Right now we are teaching Cindy how to unload and run the dishwasher. Which is great because now I don’t get stuck with the dishes as often.

Cynthia can be challenging at times, but who isn’t? I think that having a sibling with autism has definitely taught me how to be patient, kind, and caring to others. Even with all it’s challenges I can’t imagine my life any other way.

By Clare Pichler

For More information on The Shafer Center, please call 410-517-1113 or email [email protected]