Living with Autism isn’t just a story, it is a whole lifestyle. The lifestyle has its ups and downs, like any family dealing with a relative or friend with a disorder, for there to be a story for us to tell. From the outside looking in, people may tend to be insensitive with regards to scheduling and you may feel left out or isolated. I have one word of advice for you: Don’t. Most people don’t understand what you’re going through. This blog will have the goal of helping people dealing with autism in their family relate to the fact that they aren’t alone; along with educating others that being sensitive to this situation is crucial.
Extracurricular activities are good for many individuals who want to network, meet new people, and stay active. I enjoy always being on the move and having things to do. However, it wasn’t that simple for me to go out and get involved as I was growing up due to having to watch my brother while my parents were at work or had errands to run (I’m the oldest, so the responsibility automatically has to fall on me). With every activity, group, or sports team I joined, I was unable to give my full commitment. If I had practice or training in the morning before school (which was rare), I wouldn’t be able to go sometimes because my brother needs full assistance getting ready and to be put on the school bus. In the afternoon (when most extracurricular activities normally occur), when nobody was home, I would have to leave school right away, just in time to get my brother off the bus. When I reached grade 11 and 12, it was much easier because we went to the same high school and I was able to just ride the bus with him or drive us home. My parents would work the late afternoon to night shift, so I was unable to simply leave the house. Some of my friends wouldn’t understand that, which I didn’t really expect them to... we were just kids. The only time they could see me is if they came over to my house and the only time they could speak to me is through social media and BBM (BlackBerry Messenger, which was popular when I was in high school, but has now basically become extinct). The reason I had to be a homebody from after school to midnight is not because my brother didn’t want to go out, but because he only liked being outside for a couple minutes. Our home was his shrine, where he can watch TV, do his puzzles, go on the computer (mainly watch endless videos on YouTube), and probably everybody’s favourite things in the world to do: eat and sleep.
Although it would have been fun to consistently have availability to do anything and everything I wanted to after school, it didn’t bother me as it would probably bother others. Me, my brother, and my other younger sibling were and still are huge movie buffs, so we would watch DVDs and online movies endlessly (usually G-rated and PG-13, since he’s more into cartoons, animations, and comedies). It was family time, which many people don’t really get to have. You may also look at it as a way to keep me out of trouble, which it kind of did. In addition, another great skill I obtained during this time of my life was to cook, specifically making baked goods. Most of the time we still had leftovers or food that our mom would quickly make before she went to work, but sometimes it wasn’t enough or we just needed more. Other times, we just wanted to eat something sweet, besides cereal. So, I made the food network my friend and copied their recipes (how I wish we had apps for that during those times). We got to save money and just enjoy the comfort of our home.
I had a few friends that were in the same predicament as me as their sibling or a family member would have another type of disorder, so I could kind of relate to them regarding the matter. Of course a lot of people knew my brother and that he had autism, but not many people looked into what that meant for my life and my family. They would unintentionally forget that I would have to watch him and ask if I’m trying to go somewhere later, whether it is to the mall, a party, play basketball, or just to hang out. I didn’t really mind or feel down about it, but sometimes you wish you had the choice to say yes or no. Sometimes you do wonder what the day would have brought you if you went. Sometimes, you just got so tired of being in your own house, you want to be outside and do something different at the time everyone is free. The only answer I could give was “can’t, remember?”, then the response would always be “oh yeah, I forgot... let’s do it this weekend”. Some of my friends would even get mad or upset at the fact I had to watch my brother. Some, to the point they just gave up making plans with me. Again, I don’t expect them to understand because, as I mentioned in the first blog, I didn’t want to put my ‘burden’ onto others. I rather they have a good time, with or without me and tell me about it later.
Some people in my position would be devastated that they couldn’t go out with their friends; probably even some of you reading now feel bad for me. You shouldn’t. People go through different paths in life and this turned out to be mine. At the end of the day, my brother is my family and these situations teach you to be strong and to accept it.
We never asked for this, none of us did, but why not make the best out of it. Why not show your autism relative that they’re way more than just a ‘burden’ as so many people on the outside make them out to be. Why not cherish the moments you have now with your autism relative before you realize it’s too late. Why not take these situations as a blessing and not a downfall or a setback. Why not...