Learning To Be Open About Autism

Zoey Giesberg, FACT Intern & Future MSW

A new year means a fresh start. Whether you celebrate it on January 1^st or another date as per culture or religion, it’s a time of reflecting back on the actions of the previous year and vowing to make things better in the upcoming one. It’s the reason New Year’s resolutions revolve around trying to improve oneself and set new benchmarks to meet. So my New Year’s resolution is to become more comfortable and open about my autism. And it’s going to be a tough journey.

Despite being diagnosed at two years old, I didn’t know I was autistic until I was thirteen. I knew I was very different from my peers very early in life by my difficulty in making friends, handling stress and routine change, and controlling outbursts when overwhelmed. It made making friends difficult and I thought I was a bad kid because of it. My parents were encouraged by my therapists not to tell me because it’d hurt my self-esteem when they were trying to build on my strengths. But after years of constantly questioning my parents “what’s wrong with me” and a growing sense of worthlessness, my parents cracked and told me one February day in seventh grade. And it’s changed my life forever.

Learning about my diagnosis was a double-edged sword. On one side, I finally had an explanation for why I was the way I was. On the other side, I felt like I had confirmation that there was something wrong with me and I would never be normal. I felt ashamed and didn’t want to tell anyone about it. It became something I would hide from people unless I truly trusted them not to judge me for it. I wanted to prove I was “better” than autism. In short, I was scared of being thought “less than”.

But since I started working at FACT, I found that there is a huge benefit to telling people I’m autistic – people respected me for my honesty. When I began volunteering with the young adult groups and told the staff and students about being autistic, they welcomed it and listened to my perspective. Staff at FACT were generally positive to my disclosure and have been supportive every step of the way. I begun to feel like people would be receptive to me disclosing such personal information and treat me with respect. And that’s nothing but a good feeling.

Since then, I’ve become more straightforward in talking about my autism. I’ve been to conferences where I told attendees about being autistic and shared my perspective with them. I shared it with one of my classes when asked to share something that makes us unique. I started writing for the FACT newsletter and started vlogging with coworker Mikal Britt documenting my experience. I even started a blog discussing my life and thoughts about autism at Jumping Out of the Fishbowl. Feel free to check it out, subscribe, and comment.

It’s still incredibly difficult for me to talk about it. When you’ve spent most of your life hiding your autism, it’s difficult to make the leap into being candid about it. In some ways I’m still coming to terms with being autistic, let alone talk about it. But the more I practice being open, the more it becomes easy and quite frankly cathartic. There’s a sense of relief in being honest and I now feel like a more powerful person because of it.

There’s no shame in being autistic, and I’m spreading that word to everyone I know. And the more people know, the better autism will be received and real progress can be made.