I was taught that I was the expert. The “go-to” person. As the sister of someone with autism, I was the translator, the teacher, the therapist, the person who explained, the mighty protector and defender. As a child, I assumed these roles without question. For my brother Scott, I wore all of these hats at once.
I was a “good” sister for doing therapy exercises with him. When he couldn't find the words, I spoke for him. I was even the sister who swore and swung at the other kids for calling him names.
One time another student came right up to my face and said “Your brother is a stupid retard.” And the sound of that last word barrelling out of his mouth made me cringe, and I felt the long sear of his disgusting words. I swung and yelled at him and he ran away.
Later that day I went home and wrote down questions about a colourful book that my brother had borrowed from the local library. After all, he needed to work on his comprehension. We read the book together, and it was a nice feeling to read a book with Scott.
Then I told my mom about how that student made me feel terrible. The other child was wrong, she said, and didn't know any better. Scott was lucky to have a big older sister like me, my mom said. But please don't swing at the other kids next time! Right before bed, I thought, “I hope that if the same thing happens tomorrow, it happens to me, rather than Scott.”
All hats were on that day.
While I don't regret those swings, I realized in my teen years that I had to shed some of these roles. While it was great to feel like the expert on my brother—to be the person who wanted to know my brother the best out of everyone in the world—I realized that perhaps not wearing every single hat, one of top of each other, was the best thing for him or me.
Growing up Scott attended programs to improve his deficits in “social skills and communication (imagine being defined by what people say you don't have).” These services were a long drive to Toronto from where we lived in Markham. The people running them didn't seem to genuinely connect with Scott, and there was a strict relationship between the therapist and Scott. They gave him worksheets that were for a young child and he couldn't relate to them. We paid some serious money for these services.
Oddly, what ended up being most beneficial for Scott was right at home! My friends came over and he'd hang out with us, people who were his own age and non-judgmental. And it didn't cost anything!
Scott was happy and he would sit with us and focus on the interaction. My friends would say “Hi Scott. How are you?” and they would wait for his reply. With us, Scott was social, engaged and communicating. Was it magic? Or was the American Psychiatric Association's diagnostic manual, known as the DSM, unable to define every person with autism? With my friends, Scott didn’t need a defender. He didn’t need a therapist. He didn’t need a translator. He didn’t need someone explaining what “autism really is” (and really isn’t).
This was when my friends and I decided to start a high school club called Hand Over Hand. We put posters up around school telling people about different disabilities. We started a social group (free, run by youth volunteers, and very recreational). During university, we continued to work with local organizations and businesses in the community that helped us with the social group.
We started a Pen Pal Program between our members with disabilities and our volunteers to help everyone feel more comfortable when we got together (this also helped with hand writing and computer skills). It's 10 years later, and we've incorporated as a nonprofit organization. We continue to run three programs regularly, and we throw the only accessible music festival for people with disabilities in York Region. Hand Over Hand was founded on friendship and collaboration. Not only do our members work on personal goals, but they build strong connections with the people around them, and feel safe and empowered in their community.
Hand Over Hand sprouted because I realized I didn’t have to be a pathologist, transcriber, or a knight to my brother. I didn't have to wear each and every hat. I just had to be his sister.
And this is not to say that I never wear any of the hats anymore—sometimes I still have to wear a hat or two and that’s okay (in fact, I like to think of the hat I wore at 14 years old when I told the school board that they need to pay attention and step up their game).
I also wear new hats. Today I find myself explaining “neurological differences” rather than autism or translating words like “retard,” so people know why it's offensive.
Over the years, I've seen that while ignorance in the community still exists, there are people who care, people who want to learn and eradicate discrimination. From a young age, I knew I didn’t need anyone’s pity about my brother’s autism diagnosis, because it's a part of him that he shouldn’t have to feel ashamed about. I used to say that Scott is, first and foremost, my brother. But perhaps I could have simply said: I am his sister.
You may also know Melissa Ngo as a family support specialist in Holland Bloorview's Family Resource Centre. Tomorrow (July 18) Hand Over Hand is hosting an amazing, accessible music festival in Thornhill. For more information, e-mail email@example.com