Living In a World with Autism When You Don’t Know You Have It

By Eryn Segal


I was sixteen years old when I found out I had Autism. Now I am seventeen and I live a life that I am still trying to understand. It’s true, it’s difficult. I didn’t know what it was. Why didn’t the doctors diagnose me earlier if my mom knew? Why did my parents not tell me before?

My mom said she knew when I was little, and then she read the book Look Me in The Eye by John Elder Robison. She said I showed all the signs when I was little but doctors didn’t diagnose me because they kept focusing on my anxiety. I was also diagnosed with ADHD when I was younger. My teachers didn’t know enough about autism. It wasn’t common until high school, and that’s when they saw it. Also, mom thinks that I wasn’t diagnosed because I was a girl and not many girls had it. And one of the reasons why they didn’t diagnose me is because I performed well in school and I was not disruptive.

They told me at my old therapist’s office. He completely denied that I had autism. That night I went to bed questioning everything. The next day I woke up, went to school and felt like everyone was looking at me weirdly and differently, and that I was different from everyone else. I went to the guidance counselor because I was upset, and now that I think back she wasn’t very understanding about it. She called my parents and we had a meeting, I looked up the signs and information about Autism, and I looked at it and thought it sounds exactly like me. My guidance counselor was like “no you definitely don’t have it”. My parents took me out of school early that day because I was upset, and they said, “you’re not any different than you were yesterday or the day before,” but I felt like I was because now I had a label. So, while I was getting diagnosed and trying to understand a different me, I was going through a very tough year in school and socially, which resulted in me switching to a different school.

I don’t remember questioning myself before, but now I still don’t stop questioning it. I am getting used to me and improving a lot. Shortly after I found out, we fired our old therapist and moved onto a new one. Since then I have learned so much about autism. One of the first things we did was read the book Look Me in the Eye. Each week I would read a few chapters and we would discuss what events took place in the book and saw how much I related to the main character. I finally understood what my mom saw for the last sixteen years of my life.

 

I sometimes forget that if I am in a room full of strangers, whether they are my own age or not, they don’t know my stories. They don’t know where I come from. They don’t know me. I am a new face to everyone around me, and only I carry the weight of what I know about me, and my autism, on my back.

 

As I sit and write this, it forces me to look back at the last year of everything. What has happened, what is happening, the challenges, my strength and weaknesses and my goals.

I can honestly say there are many challenges in my day to day life. I will make a separate blog about that. The main challenges I deal with are social interactions with others. If I walked into a room full of strangers I would feel awkward and uncomfortable, as anyone else would. What makes me different is that I can’t start a conversation. I can’t speak for myself. When I am in a room with my mom and dad, I look to them to answer for me most of the time. Even if it is the simplest question like “what’s your name?” When it’s pointed out that I do that, it makes me upset because I need to be able to speak for myself so I can be successful in life, and college, and not have my mom or dad or sister worrying every second if I am okay.

I sometimes forget that if I am in a room full of strangers, whether they are my own age or not, they don’t know my stories. They don’t know where I come from. They don’t know me. I am a new face to everyone around me, and only I carry the weight of what I know about me, and my autism, on my back.

I don’t have many friends that know I have autism. I also don’t have any friends with autism. I question what other girls my age with autism go through. Do they have social skills that I don’t? Do they obsess over social media? Do they have a hard time meeting new people? Is it easy for them to make friends? How do they handle their emotions? These are just some of the things I think about daily, along with the rest of my life happening.

“Just because my path is different doesn’t mean I’m lost.”

Author Image
Eryn Segal is a high school junior, almost senior, with a different brain. She was diagnosed with Asperger’s syndrome a year ago. She is very interested in football and the Miami Dolphins.
Author Image

Eryn Segal

Eryn Segal is a high school junior, almost senior, with a different brain. She was diagnosed with Asperger's syndrome a year ago. She is very interested in football and the Miami Dolphins.

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