This is a contribution from my daughter Elisabeth, on what it was like growing up with a Special Needs Family Member.
My mother told me to read this article on Thriving With Autism and it begins with, “Recently, I posted this tweet: ‘Siblings can be the silent casualty in a family’s battle with autism’”. Before I even got a chance to keep reading, I immediately realized that someone was finally giving me the words I had been trying to find to describe my childhood. Then it goes on to say “One follower was less than thrilled with my use of the terms ‘casualty’ and ‘battle’”, and I was suddenly confused. Did people think the way I felt as a child was truly selfish? This was the battle I had with myself from the time I learned to talk until I was about 14. The true casualty? My self-image.
I found myself really identifying with what Andrea Warner was saying in this article, and to be honest, this is only one of the few times that I have heard someone else’s perspective on growing up with an autistic sibling. My self-growth throughout my teenage years was the only thing that helped me learn to cope with having a sibling that needed not just more attention, but a different kind of attention than I did; a kind of attention that seemed more important to others. Unlike Andrea, though, my parent’s ability to deal with our situation wasn’t the problem.
When I was in elementary school, I viewed my brother as a social crutch that prevented me from being on the same level as everyone else. I wanted nothing other than to be equal to everyone. I didn’t feel that was possible and I over-compensated for that by trying way too hard to be everyone’s friend. People’s reactions to that did nothing but lower my self-image. For part of the time I was in elementary school, Matthew and I went to the same school. I felt like my school and home lives were becoming too intertwined. I used to introduce people to him by saying, “This is my brother Matthew, he’s weird!” I thought that if people knew that I was already aware of his differences, I wouldn’t get prosecuted for them. Nonetheless, I was outcasted many times not because of Matthew, but because I was socially awkward due to the inward turmoil that arose from my inability to deal with my situation. People didn’t understand me, because I didn’t understand me. I loved my brother, but why did he have to make me different from everyone else? I just wanted to be the same.
When I got to junior high school, I can remember defending him on countless occasions when he was being bullied, but none of my peers ever praised me for that. If someone my age had just told me that I was doing the right thing, I wouldn’t have felt like I was incapable of truly fitting in. Andrea talked about that in the article, and it makes me sad that we both look back on it as “if only someone had told me…”.But no one else I knew had any idea how to deal with it either. I was going through the hormonal changes that come along with the teenage years, and I felt like it was a hopeless fight to try and be normal.
When I became an 8th grader, I found a friend whose mother worked with “differently-abled” adults, and she really helped me to embrace the situation that life had given me. I finally started to realize that I couldn’t change the way things were. This was my life, and I should be proud of all of the things my brother had accomplished. I realized, mostly on my own, that he has progressed immensely and farther than anyone thought he would have and that’s something to be proud of. My parents had told me these things all along, of course, but they weren’t at my school to remind me every time I felt left out. Their message finally started to sink-in. I had to find myself and allow myself to grow under these circumstances, so that I could be a part of my brother’s growth too.
Now I am in college, actively participating in my brother’s life, and I know who I am. I have learned, as everyone does, that fitting in and being the same as everyone else isn’t something to be proud of. Being a good sister to my brother is something to be proud of. And I will never spend another second worrying about what other people think.
So as Andrea said,
“’Casualty?’ ‘Battle?’ I stand by my word choices. It’s not like I made them up. I lived them.”
I survived the battle. And I wouldn’t change my situation for the world.