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How a Website Helps Explain My Experience as a Person on the Autism Spectrum

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I remember many years ago, not long after I was officially diagnosed as being on the autism spectrum, I had been searching for ways to explain my struggles. I was trying to be a self-advocate, but I just didn’t know how to put my thoughts into words quite yet. I turned to the internet for help. Somehow, I came across a link for a website associated with PBS called Misunderstood Minds. Considering I felt misunderstood, I clicked on it.

The site was based on a PBS special about learning differences and disabilities. It included interactive activities where you had to listen to and follow instructions. After completing the activities, you find out if you did them correctly or not.

The link I had clicked on brought me straight to the “Attention” page, where I saw the words “Experience Firsthand” at the top followed by some activities to try. By this time, I knew that I learned well through experience, so I decided to try one.

The auditory activity hit so close to home. I was supposed to listen to the directions from the teacher and put cards on the screen in certain places. When I was done, the cards would flip over to show one big picture. By the time I was done, I had missed the instructions for over half of the cards, and my big picture was an unfinished, jumbled mess.

But as a result, I realized I had found my way to explain some of what I experience. It was a way to share the difficulty I had in trying to process what people are saying, especially while distracted. It was also a way to show that, no matter how hard I tried, I couldn’t seem to get things right. I needed help, and this activity allowed me to express that in a way that I hadn’t been able to do before.

The reason the activity helped me to explain what I experience to others is because I knew that, no matter how hard people tried, they would still struggle with it, too. At one point, the teacher in the activity even mentions that everyone needs to “listen up” or they would get it wrong. Well, this experience showed to others that even when I tried my best, I would still mess it up. And after struggling so much every day, multiple times a day, sometimes I would feel so helpless and defeated that I would give up instead of asking for help. This activity helped explain why.

Over the years, I’ve found more words to communicate my needs and have become a major self-advocate. However, this activity still provides insight into my world. I fall back on it, from time to time, using it as a tool when I struggle to explain why I need help.

Lead photo source: Thinkstock Images

Originally published: September 26, 2016
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