Lights, Chaos, Action!
By my first birthday, I had been assessed three times for pervasive developmental delays. I couldn’t walk or talk yet — in fact, I didn’t start talking until I was four, even with three years of speech therapy. I was a genius with jigsaw puzzles though, and I liked to line up my toys instead of play with them. This tipped my mom off that maybe I had autism.
When I started school, my child psychiatrist diagnosed me with Asperger’s syndrome. In middle and high school my diagnosis changed to pervasive developmentally delayed – not otherwise specified. Now, my official diagnosis is autism spectrum disorder. When I was in school, teachers didn’t really know much about high functioning autism, and couldn’t make clear to me what they expected. Most of them blamed both me and my parents for how I behaved and failed to follow instructions. But it wasn’t because I wanted to misbehave; I was just really stressed out.
Here’s what you should know about my autistic quirks. Whenever I enter a room, I pick up on all the minuscule bits of information going on around me: from sounds to lights to colors. It took me a long time to get used to the amount of stimulus my brain interprets on a regular basis. So when I was younger, I would often get overwhelmed by unfamiliar situations, and then cause a scene or physically shut down because of all the stuff I was seeing and hearing. It was as if I was in the midst of a sandstorm, with no patterns or meaning to all of the information whizzing past me.
Another thing I have trouble with is picking up on verbal cues or body language and interpreting subtle hints and metaphors. My mind is extremely literal. I’ve had to learn common sense: I’m better at this now, though I have always thought about everything I’ve said or done, down to the most minute detail. It scares me when I don’t know how people would react or what they would think about me. Plus, when I was young, my mind couldn’t link consequences to past or future behavior.
When people assume they know what I’m capable of, I feel put in a box, and I don’t feel like my own person.
They put me on Ritalin when I was 2 years old, which made it feel like an elephant was sitting on me, suppressing all my emotions. I was on it until I was in grade 3. The good thing about being on it was that I was really docile for my teachers and easy to deal with most of the time. The downside was that it kept me from learning all I needed to.
All through elementary school I was bugged, teased, and picked on. I’d play with other kids, but I didn’t understand why they treated me the way they did. I tolerated a lot of abuse just so they would include me. I was even kicked during recess one day. By middle school, my classmates had started to ignore me, which was a step up from being bullied. By high school I was able to make some friends. I would try and seek out people who were off by themselves, because I thought they probably felt just like I did.
I’ve always felt different from other people. I think there are a lot of people like me who feel they clash with the norm. I didn’t always know why I was different, or what I did that made me different — I still don’t realize it sometimes. In my own mind, what I’m doing or what I’m thinking feels normal to me.
Often people feel like they understand my ability to do certain activities because they know another person who has autism. But one of the most interesting things about autism is that it manifests differently in each person; just because I behave or think a certain way, doesn’t mean that’s the same way someone else with autism will behave or think.
So when people assume they know what I’m capable of, I feel put in a box, and I don’t feel like my own person. I feel pushed to do things I’m not comfortable doing, or I feel underestimated in my abilities. I sometimes wish people could just accept me for who I am.
Yes, I have had stress, challenges, and hardships all through my life. But each struggle has brought me a little bit closer to where I am now. I am who I am because of these things. I’m proud of my accomplishments: I can speak in front of people, face challenges that scare me, overcome obstacles, and I’m a lot more flexible than I used to be.
Without people who have supported me and helped me on this road, I would never have travelled this far. Especially, my mom, who has stayed strong and encouraged me to do my best and to not give up.
No two people with autism are the same. But if you’re somewhere on the spectrum, know that you’re not alone. Someone on our team would love to hear about what you're going through. If you use the form below, you’ll hear from us soon.
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These issues can be hard to face. If you’re considering harming yourself or others, please read this!