Monthly Archives: September 2012

On Eye Contact

Some people get offended when you don’t make eye contact with them. I was at a store today buying ear plugs (sound sensitivity blog post coming soon) and didn’t make eye contact with the cashier. I may not pick up on body language and non verbal cues instinctively, but I’ve been alive long enough and accumulated enough experience to surmise that when a person’s mouth forms a certain shape and their voice sounds a certain note or range of notes, that might mean you have offended them.

So here is a blog post devoted to eye contact. I can’t speak for every autistic person. The saying goes, if you’ve met one person with autism, you’ve met one person with autism. The spectrum encompasses a wide variety of presentations.

But for me, a lot of my world is turned up and seems very intense. Something that a lot of autistic people experience are sensory sensitivities. These differ among each individual person. Some are very sensitive to the flicker that florescent lights emit. Some are sensitive to the buzzing or humming noise lights can make. Some are sensitive to touch and can’t stand the feeling of shirt tags or sock seams. Some can’t stand certain noises.

The important thing to keep in mind, something that even professionals tend to mistake, is that it doesn’t mean EVERY autistic person is going to have EVERY sensitivity. Some autistic people are even HYPOsensitive (undersensitive), for example, hyposensitive to pain.

I will go more into my specific sensitivities in the next blog post, but imagine that parts of your world were ramped up. Imagine that everything looked super vivid or bright and it exhausted you to look at it for long. Or you picked up every little sound and it was impossible to concentrate because you heard EVERYTHING.

And then imagine dealing with people. People are loud, confusing creatures. At least for me, I am usually struggling to keep up. Maybe I can’t focus on the conversation because too many other sounds are happening nearby. Maybe I don’t understand the other person correctly because I’m not reading the body language, and am hurrying in my thoughts to try and decode what they’re saying into something that makes sense to me. Maybe I’m in a group of people and am fighting against shutting down because there is just too much going on.

And they expect me to add eye contact? I actually don’t know how it feels for you, but for me, looking into another person’s eyes and having them look back into mine feels like I am touching a hot stove. I am being burned. It’s like an extra jolt of overwhelming input – I already described how sensory sensitivities can be overwhelming. When there is a lot going on, SOMETHING has to give.

And that’s why sometimes I can make more eye contact and sometimes I can make less eye contact. Sometimes the other input is less, and I can briefly endure the jolt. I do it to show you I can speak your language for short periods of time. If I need to underline something with body language, and the other demands on my senses aren’t too intense, I’ll look you in the eye. There’s another myth – it’s not true that ALL autistic people NEVER make eye contact.

But a lot of time that you think I’m looking you in the eye, I’m probably looking at your nose, or your mouth. I watch mouths a lot. I’ve lived a lot of years and went through enough childhood experiences with adults yelling at me to “Look at me when I’m talking to you” that eventually I learned to pacify, if not actually comply. I do it to make you happy.

What would make me happy? People clearly spelling out their intentions. People  who don’t judge if I need to turn the noise down a little. People who don’t get offended if I can’t figure out how to reciprocate appropriately. The biggest barrier for me to making close friends is that I don’t know how to appropriately reciprocate a friendship. There needs to be a book for that.

It would be nice if there was some more understanding out there.

What Isolation Means to Me

I am going to repeat something that I mentioned a couple of entries ago: Autistic people get lonely. You might think the way to deal with that loneliness is simple – go be with people. But for someone with autism, it’s a little more complicated than that.

If there is one thing I’m obsessed with and will gladly absorb myself in for weeks and weeks on end, it’s musical theatre. I just finished a run of a play (the run is what they call the time the play is on stage) where I was acting. I was socially successful in this group of people, largely because theatre is what gets me engaged. When I’m immersed in my interest, that is when I’m truly engaged with the world. Most autistic people have an interest or two like this.

But I’m not always that socially successful. Just today I went out for lunch with a group of people with autism, and the restaurant was very crowded and very loud. I barely spoke a word. I couldn’t formulate thoughts. I couldn’t contribute to the conversation. I wasn’t even AWARE of the conversation most of the time, I was too busy trying to calm myself down and stay in my seat.

The functioning level of people with autism can fluctuate. People who see me during a theatre show have seen the REAL, engaged me. But when something causes me to disengage, be it noise, or light, or overwhelming emotion that I can’t even name, I’m not nearly so functional. And sometimes the amount of extraneous input that causes me to disconnect can be small, sometimes I can tolerate much larger amounts.

I mentioned that I just finished the run  of a play. This means, all of my social connectedness and the things that make me engage with the world have ended. So I’ve been feeling sad. I’ve been feeling lonely. I’ve been feeling isolated. I still engage with the world. I go to the practice rooms at my university and sing, and get ready for the next theatre experience, for the next audition. The next chance I’ll have to feel those social wires connect. But I don’t really engage with people very much.

So I guess what I know is, it’s hard for me to connect with people. I don’t even know how to keep a conversation with non theatre people going, never mind make friends with them. So my cure for isolation is to immerse myself in my interest and the people will follow?

I hope so. Because the solution to loneliness for an autistic person is not as simple as just going to be with people. You have to go be with accepting people. I was successful in the cast of the play because they KNEW I had Asperger’s, and even if they didn’t know exactly what that meant, they didn’t discriminate when I asked them not to whistle, or when I needed to turn the music down, or when the audience was too loud and I had to plug my ears backstage. They didn’t care if I didn’t understand pop culture references unless they related to Broadway, or that I turned several conversations into conversations about musical theatre.

So of course it’s a culture shock when the show ends and all of the sudden you barely see those people any more. For someone who has trouble making friends, it makes the isolation so much harder.

Temple Grandin is a big advocate of letting autistic people thrive by building a life from their strong interests. I support this idea. Because the place I thrive is in the theatre. I saw that clearly this summer.

Sometimes I forget

I know this is mainly an autism blog, but this might be relateable to a wider audience: Do you ever forget that you’re absolutely awesome?

Come on, you know everyone is. Everyone has a battle, everyone has a story, everyone has been cut down or forgotten. And because you’re still here, you’re awesome.

Because I’m still here, I’m awesome.

I struggle with my identity. I struggle with my confidence. I struggle with liking myself. Do you? I thought I was over it. I made a transition and was finally living as me, the true me, without hiding anything. And I was being accepted. And more importantly, I accepted myself. I loved myself. And I loved letting other people get to know me – the real me, no holds barred.

And then something happened that shook me. It took my confidence, it returned me to that victim place that my younger self was all too familiar with.

And for a brief moment I disliked myself again. I shut down.

But the title of this post is “Sometimes I forget”. Sometimes I forget:

I forget that the way some people have treated me does not have to define who I really am.

I forget that I am strong.

I forget how far I’ve come.

Please, anyone out there who has been victimized, which happens all too often to not only autistic people, but the general public as well – don’t forget.

Don’t forget who you were before you were struck down.

Don’t forget that you are shining and beautiful the way you are.

And somewhere, you will find people who see that in you and bring it out.

Sometimes I forget.

But tonight, I remembered.