There are many benefits of adapting language to counteract longstanding negative connotations. It is hard to believe that just a few years ago transgender people were so recently defined as having “gender identity disorder”. Referring to someone as a “schizophrenic” removes their personhood and defines them by their illness. Replacing it with “a person with schizophrenia” goes some way towards restoring it. Language matters.
In the words of our 15-year-old guest writer below, we can see that the dropping of the word “disorder”, while helping in the long term to counteract stigma, does not decrease the lived challenges of caring for a loved one with autism.
Aleska’s experience
Having an autistic brother has forced me to adapt the way I live, think and feel. I have missed out on things because of our family’s situation but if I think about it honestly, I don’t worry about it a whole lot any more. That doesn’t mean it doesn’t concern me but I guess I am busy living my own life. This is where the adapting comes in. If I stressed out every time I came home to screaming, yelling and things breaking, I would probably go insane.
I feel extremely protective of my brother. I’ve seen how school and society can view him. They have no idea. Some people target my brother and put him down, just so they can stand out. I’ve heard people say “what a brat” and “what a rude little boy”. They assume and that is one of the things I can’t stand. I can’t really explain what it’s like because it’s one of those things that can’t be imagined. You have to actually live with it to understand, unless you are specially trained I guess. I hate when people see autism and think they know what it’s like after witnessing it briefly.
The biggest thing that affects me is the impact on my parents, how they cope and how the stress gets to them. My mum works with my brother day in, day out, and I can see it’s a struggle. Patience is something I lack. Actually, I probably have none. And this causes problems because I go through everything with my brother, and when I’ve had enough I snap, yell and scream. Patience is very hard to get, I’ve realised. My mum and dad seem to have limitless amounts of it, and they have trouble understanding why I don’t.
I try to see my situation as a learning opportunity. I have learned not to assume things about other people, not to be rude to people, instead to understand other people’s situations. No autistic child is exactly like another. For all these kids, their autism affects them differently so their situations are different. I’ve gained a lot, growing up with this, but it hasn’t been easy. Trust me, no-one would want this or ask for this. But in saying that, I wouldn’t want another little brother than the one I have. I have adapted.
