I never asked for this. Well, I guess I did. I wanted to know why I was different. I fought to get myself access to accommodations and knowledge that would even the playing field. I DID ask for this…but not what it has done to me.

Learning you are autistic as an adult is hard. I know I’ve talked about this in years past on this very blog but whenever I think about opening myself up for a blog post, this is the thing that keeps coming to mind. I wrestle with it daily. What does it mean that I have been diagnosed with autism?

Whenever I was diagnosed, I let myself regress. I pulled back to a level of awkward that I had never been at before…not publicly at least. It felt like it was a show and to an extent it was. I was forcing myself to be more aware of my feelings towards socialization and be more intentional that I ever had before. When I started listening to my inner voice, it felt like I was losing the social empire that I had built.

At one point I had been a pretty popular kid in school. I was noisy, obnoxious, and annoying but I was me. In high school, things got more difficult but I still had a group of people who associated with me and I was relatively established in my class. People at this point, mostly disliked me but I had a “brand”. People knew who I was and in my head, I had an ongoing note of the way each person saw me and why.

When I was 21, that all changed. After my diagnosis, I struggled to figure out what that meant. I saw a special education teacher that I had great respect for growing up and told her about it. Her response chilled me to my core and started me on a path that I am just now recovering from. “You were diagnosed with autism? That doesn’t seem right. You don’t seem like you have autism to me”, she said. In that moment the great victory I had in my self discovery shattered.

In that moment, I realized that if I was going to share this knowledge with other people, I was going to have to prove that I was “autistic enough” to each person I talked to. This spiral lead me on a path of personal destruction that I wouldn’t recover from for years.

Each time I was in public, I felt like I was getting on a stage. I was so self aware of how the people around me would view me. The words I chose, the way I held myself, and the way I allowed the environment to affect me were always under closing monitoring. If I wanted to see if self stimulating behavior would make me feel better, I couldn’t just do it…I had to make it part of who I was. I felt like I couldn’t just try things to see if it was good or not. I had to commit. I got noise canceling headphones and wore them to work and in public. I felt like I had to commit to it and now, it was part of who “my character” was. I couldn’t step away from something like that because it would make me look like a fraud…the deepest fear that sat in the back of my mind at all times.

Fraud. It’s a word I would call myself and I would imagine people calling me if I started “masking” and taking on the world again or if I started to relax too much and they couldn’t see my visible discomfort with noise or socialization. Displaying discomfort affords you a certain sense of social leeway. I could mess up and be awkward and it could sting but if I visibly shook my hands afterwards, I could communicate that I was trying my best. This ended up with people calling me “buddy” and not respecting what I did or said thinking that I was below them in my mental capacity

This all peaked recently whenever I was looking for work. I started working at a local nonprofit organization as a self-determination instructor. This was a position for people who identified as having a disability to speak to other people who identified as having a disability and teach them life skills and important information. Being an advocate in this way was really powerful for me but also really difficult. In the job, you have to connect with the people in the class. Them feeling like you are on the same page as them is what makes the class more impactful. So I pushed myself. I forced myself to do things in public that I was not comfortable doing. Pacing, stimming, fidgeting, and talking directly. These are behaviors that I had grown comfortable hiding around people I wasn’t comfortable with but here I was pushing my private self to be made public. This was unsustainable. I burnt out so very quickly and I ended up having to leave and find something else to sustain myself through college. The worst part was whenever I told the secretary that I had left to become a substitute teacher at a local school district to make ends meet and she was surprised that I had the ability to do it.

People have prejudices against people who are neurodivergent so self-expression can be really tricky. There is a very difficult line between expressing inner feelings, embellishing behaviors for validation, and forcing private feelings and behaviors to become public. I feel like my journey has been messy. I have been on all sides of this and I’m finally reaching the point where I am tired.

I’m an autistic person but that doesn’t define me and I won’t let it anymore. Yeah, I can joke around and have fun with people and it may be harder for me but I can push through the difficulties and if I make a social mistake, I can talk to the person about it privately and give them more information if it is relevant. I don’t have to become a billboard of disclosure to be accepted for who I am. I don’t have an unlimited amount of time in this life and I am tired of using that limited time trying to get other people to accept me and understand the machinations of my inner thinking.

This was a real roller coaster of a post. I didn’t do any kind of Grammarly check or anything like that so I know it might be a little clunky. I apologize for that. I just wanted to get this out of my head and onto the screen before the passion to express myself left me. I hope this was helpful. If you are autistic and are going through the same thing, know that it is going to be ok. Be yourself and don’t like anyone who says that you don’t look autistic get you down. You don’t have to prove it to anyone.