I grew up in the middle-class suburbs of Pittsburgh. I played softball, collected barbies and everything else an average girl would do growing up. On the other hand, I went to occupational and speech therapy every week, but it was not for me.
My younger brother was diagnosed with Autism at the age of three, I was only six years old and did not really understand what that meant. I had no idea that people would often only refer to me as “Jack’s sister” or “the sibling” or how important it was for me to always be a “good girl” so my parents had less on their plates. Being the sibling of someone with a disability has never been easy, but it has molded me into the aware and empathetic person I am today.
I recently discovered a new term for children with disabled siblings: glass children. “The word glass is chosen to describe them because people tend to see right through them and focus only on the person with the disability,” Rochelle Barrand states. In the book Wonder by R.J. Palacio, the older sister of a boy with a facial deformity says, “August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.”
It is important to understand that my experience as a glass child is nothing compared to others. I have always been loved and supported by my family, but I can understand feeling unheard or resentful. Multiple psychological studies show that children with disabled siblings are at a higher risk for anxiety and depression. There is also a term called parentification, which refers to the phenomenon of glass children having to grow up quickly and feel partly responsible for their disabled siblings. Parentification often leads to these individuals not perceiving the right amount of caretaking in their adult relationships.
Having a sibling on the spectrum has been anything but easy, I have learned that life is not always fair from an incredibly young age. I figured out how to be relatively independent and mature for my age so that my family could focus on my brother and his needs. I made sure always to get good grades because I knew it was one less thing for the adults in my life to worry about.
“One of the biggest differences in having a neurotypical child and a child on the spectrum was the level of communication,” my mother tells me. Experiences that came easy to me were the exact opposite for my brother. Expressing emotions and thoughts was completely different for my sibling, who could not exactly just say what he needed. This was a frustrating facet of what I had to grapple with as a neurotypical, but I learned how to understand the way my brother communicated so that he could have the best chance at using his voice.
My journey as a glass child has never been easy, but I would not trade it for anything. My brother sees the world from an innocent and kind-hearted point of view. He touches everyone’s lives that he comes to meet. It is amazing to see how he has progressed over the years, and I am so happy to be a part of that.
For other children with disabled siblings, there are a lot of resources available. The Sibling Support Project offers peer counseling sessions so glass children can meet each other and share their own experiences.