The Act of Normal

I’ve been reading a lot of posts lately about people saying that they’ve been told that they couldn’t have autism because they seemed too normal or well-adapted. I’ve been thinking about this in regards to my life. I’ve had lots of people tell me that they never would have guessed that I have autism. My response to this is usually something along the lines of I’m glad that my act is working.

I try very hard to appear normal. I think this is partly because I want people to see that people with autism aren’t all that different from themselves and partly because I’d rather keep my autistic side hidden away in a place only I can see and experience. Autism is like my hidden secret, my hidden world. It’s like when you want to keep all the chocolates to yourself so you hide them under the bed and only savor them when you know that no one else will know about it. I love my autism and doing autistic things because it’s natural. It’s freedom. And I don’t want that freedom changed by the world so I keep it to myself.

Now this may seem somewhat contradicting, but I am actually very open about my autism. It’s hard to be on my facebook and not see that I have autism. And I’ll tell people I have autism if the topic comes up. The secret hidden things though are the actual autistic behaviors that I exhibit.

Talking about them, such as on this blog, makes them almost less real and more like abstract concepts that we try to analyze and understand. However, seeing them makes them real and tangible and they become a problem to those around me. That’s why I try so hard to make my autism as abstract and distant as possible. The more distant my autism seems, the less people see my autism as a problem and the more autistic I can actually stay.

Hiding my most autistic traits is something that comes automatically to me. No one, not even my family, has seen my hands flap. No one has seen me so uncomfortable that I want to wriggle out of my body. People have seen me twist my hands or scratch myself or shift in my chair and a couple times certain people have seen me cry, but in general people have only seen what I deemed appropriate for them to see. They’ve seen what I felt was ok for them to see based on our relationship and their therapeutic role or work position.

Even if I were to try to show my hidden autistic traits to someone, it would be impossible to do so. I literally cannot do certain things in front of people. My body just wouldn’t allow itself to. Instead, I do the socially appropriate things and deal with the uncomfortableness of holding things in until I can be alone and get things out.

When I am alone, I can be whoever I want to be without worrying about whether it is the “right” thing to do or not. By hiding my autism from those who might try to squash it, I preserve the beauty of it. I love jumping for joy when I’m alone or smiling so much that I feel like my happiness will burst out of me or flapping my arms because I’m excited or simply glorying in the textures of the world around me. I even pretend sometimes to have conversations with people that I could never have in real life. I can work out my frustrations easily because there are no pressures to work them out in the way other people want me to.

And so, the act is not only to try to reduce stereotypes, but also to preserve the beauty that I see my autism to be.

So when someone says, “you seem so normal” or “I never would have guessed” or “wow, I’m surprised”, I secretly cheer inside because my act is working.

Learning about Autism

The making of this blog has caused me to look into autism a lot more than I ever had before. Although I have been curious from time to time about what autism is and how it affects me, I had never really researched examples of autism or specific traits people with autism tend to exhibit. I majored in Psychology and took classes that talked about autism so I knew the DSM-IV diagnosis and the criteria to fit that diagnosis, but until recently I never realized how much of my life was affected by autism and how symptoms of autism manifest themselves in real life.

It is sometimes hard to learn about autism. There are a lot of things that pertain to me and a lot of things that don’t, but that can be hard to hear anyway. It’s sometimes difficult to realize that I’m bad at something because of autism. It just makes me realize (or perhaps remember) that I’m different, which isn’t always something I like to be reminded of. It’s also sometimes hard to learn about autism because then I realize that I struggle with something that perhaps I didn’t realize I struggled with before. It’s like if someone pointed out a flaw to you that you never realized you did and then you’re somewhat subconscious of doing it after that.

I also have so many unanswered questions. No matter how much I learn about autism, there are things I don’t know or don’t understand about both autism and everything else. I wish that I had people that I could ask some of these questions, but how can you ask something no one has ever asked before when you already have problems asking questions that are asked every day? I know that my parents are willing to answer any question I may have, but some questions just need to be answered by friends (which is also another problem for someone with autism).

Anyway, maybe one day my questions will be answered or I will find a way to answer them myself. I also sometimes wonder if people without autism have questions about what is normal and what is not. I can always look to autism websites to find out some things that are not normal, but where does one look to find out things that are normal?

What’s in a Name?

Since I have high functioning autism or Asperger’s syndrome, a lot of the harshness of the disorder probably doesn’t sink in with me. I don’t see “the big deal” of autism. I don’t understand people’s hopelessness with the disorder or their fears that their child won’t have a normal life. I guess part of it is also because finding out I had autism was not a burden to me.

Autism has always been and will probably always be just a name to me. When I was diagnosed with autism and my mom gave me a rough explanation of what it is, I didn’t see the point of the diagnosis. To me it didn’t change anything- having a diagnosis didn’t make me feel any different, it didn’t help me make friends any easier, or make life any easier, or change anything in my life. Autism was simply a name that someone had decided to call what made me different. I still feel that way about autism. Autism is a part of me just like playing sports is a part of me or liking music. It’s not something I feel I can separate from myself and it’s not anything that was thrust upon me when I was diagnosed.

Now in saying that autism is just a name, I’m not saying that autism is not a real disorder. Autism is a real disorder and really does affect the people with it. However, I don’t think that getting an autism diagnosis changes you. I don’t think that babies contract autism. I think that we’re born with autism. The only question is how long it will take for someone to say the name of autism in association with our symptoms. Some people have autism and are never diagnosed with it. Some people have autism and aren’t diagnosed until they are adults. I don’t think that it matters when you are diagnosed or how you are diagnosed. If you have autism, then the name fits and you add that name to your other lists of names and move on.

The one thing that I do believe helps with getting the autism name is the support. If you will get more support from having the diagnosis of autism, then it is worth getting the name. Otherwise, autism is just a name.