6 Things I Wish People Knew About Me as an Adult on the Spectrum
I was diagnosed with autism spectrum disorder almost a year ago, and although I have experienced my life this way for 37 years, there is still so much learning for all of us to do. So here are six things to know about me as an adult with autism:
1. High-functioning autism is actually hard work.
I’m on the autism spectrum, but I’m high-functioning and an adult. So people can be less empathetic because it seems like I face less challenges. And most people tend to think I’m old enough to know how to behave so they don’t expect me to have social challenges. But I don’t always answer the phone. Sometimes it takes me too long to respond to messages because I don’t feel like talking. I do my very best at all times, but please remember I face some challenges that I can’t control and will not always meet your expectations.
2. We will almost always see things differently.
Autism makes me see the world much differently than you do. I’m beginning to learn just how different my view of the world is. I’m learning it’s OK to respect that everyone doesn’t see things the way I do, and I’m asking you to respect the fact we will almost always see things differently. No need to try to change my mind. My mind is working just fine. It’s just very different. Every coin has two different sides, but it doesn’t change the value. We may see things differently, but we can still find value in each other’s perspectives if we try.
3. My being so different can be difficult for you.
I understand I’m not always easy to figure out, but more often than not this is a direct result of my psychology, not my personality. I don’t choose to be difficult anymore than you choose to be difficult for me to understand. Autism is not a character flaw; it’s part of how I was created just like my eye color or height. It’s who I am, not just how I act.
4. I don’t see me the way you see me.
My autism makes it difficult for me to read facial expressions. Growing up, I didn’t learn how to mirror facial expressions and emotions very well. I really only recognize smiles when attached to laughter. That means my facial expressions are often not as distinct as yours. I often don’t know what my face looks like when I am conversing with you. Please know I’m not angry with you or disinterested in what you’re saying. It really helps me to know what you see. You can help me by asking me how I feel, despite how my face looks. Don’t assume anything. Please do me the honor of being honest with me while allowing me to be myself.
The world I live in is extremely black and white. I like deadlines and due dates. I like appointments. I hate being late and don’t like showing up too early. I turn lights off and close doors constantly. I love rules and color inside the lines. All of this is because I don’t do well in unplanned and unstructured environments. Spontaneity scares me. Experiencing sudden changes in plans often feels like turning off the lights in a room, making it pitch black and asking me to navigate my way out of the room. I know my lack of flexibility can drive you crazy, but ambiguity makes me anxious, and it’s usually not good for either of us. I’m working to be more flexible, and perhaps you can learn to help me by being a bit more predictable.
6. I get lonely, too.
Yes, I like to be alone, but that doesn’t mean I like to feel lonely. My need to be alone is in no way a reflection of how I feel about you or about people in general. I love people. I love to hang out with people. I do struggle with being in large groups and can’t do it for long periods of time. Social activity is like sprinting for me. I can do it, but it’s fast and furious, and I can’t do it for long periods of time. Don’t stop inviting me to your gatherings. I would love to be with you, but just know I can only give you what I am capable of handling at the time.