Sunday, January 4, 2015

What's it Like to Be Autistic?


Here's one of the questions that an openly autistic person would do well to get used to answering. If you know any autistic people, you've probably wondered about it, even if you've never thought to ask out loud. What's it like from the inside?

Speaking as an autistic person, this is a very difficult question to answer. The simple answer is I don't know. Autism is the natural state for me, and as such, I have nothing to compare it to. Just like you wouldn't be able to tell me what it's like being neuronormal, having never experienced anything else.

While most people seem to understand that answer, I also realize it might be disappointing. Let me see if I can give you a more detailed answer. Please understand that I can only answer from my own experiences and I can only relate them to my own experiences. Some of what I describe here will seem different or foreign to you, and some may seem familiar. Since much of what I'll talk about are things that most people either don't think to share or are uncomfortable sharing, it's difficult to tell which is which.

Autism is a social disability, so experiences with attempted social interaction seems like a logical place to start. Throughout my school years, I was never really able to get the correct social behavior. The people around me would usually let me know somehow, usually by laughing at me. I never understood during that time exactly what I was getting wrong. All I knew was that, even when I was copying the behavior of others around me, it would still be wrong.

Human behavior is frequently difficult to understand for a naturally logical individual. One thing I've learned is that the neuronormal mind must be trained in logic in order to use it, meaning that there is very little logic involved in normal interactions with others. The autistic mind, on the other hand, is highly logical. This means that when we apply our own way of thinking to the behavior of others, most of it won't make sense. That isn't to say that we can't learn it.

Temple Grandin has described autistic people as being anthropologists from Mars. This is a description that has always made sense to me. I am, almost on an academic level, studying my own culture from the outside. In college, I took classes in psychology, anthropology, and even acting, all of which have helped me to better understand the world around me. Of course, having more experience, seeing more interactions between people, and being around less judgmental people have helped as well.

Despite some of the social difficulties I've had, I can think of three types of communities (outside the autism community) that I've felt very comfortable in. In no particular order, the first is hippies, who tend to be very accepting of diversity and non-standard social behavior. Second is nerds. Many of the characteristic autistic traits, such as obsessive interests, focus on details, and memorization of seemingly useless information, are considered normal in nerd culture. Finally, the martial arts community. Martial artists are taught that the skills they learn are dangerous, and therefore, to try to avoid conflict and get along with those around them. If done well, this can lead to some very open-minded people.

Perhaps the biggest reason for social difficulties in autism is a simple matter of where the focus of attention is directed. My understanding is that most people focus pretty intently on facial expressions, body positioning, and tone of voice, starting as infants. There is a strong emphasis placed on the importance of social conformity.

In contrast, for an autistic person, being excluded from the group, while unpleasant, is not completely devastating. However, there is a trade off. Most of us tend to direct our focus to how things work. Whether it's structural, mechanical, biological, ecological, or even linguistic, we tend to excel at looking at the individual pieces of something and figuring out how they work together. I would guess that this is why many of us learn about things that interest us very quickly. Now that I think of it, I've even had to learn about social rules through this lens.

One question you've probably had on your mind since you started reading this is what is the most frustrating part of being autistic? I would have to say that it's people who think they know something they don't. Throughout my life, people have frequently tried to explain how I experience the world, usually without asking me about it first. Of course, they're also frequently wrong.

This might seem harmless. So people think something that isn't true. So what? In fact, it isn't a problem until people start acting on it. Most of the time, it has been in the form of accommodations I didn't need. I remember one teacher that set up a private room for me for when I was overstimulated. It was my choice when to go there. That's an example of something that worked, and was based on ways I actually experienced things. On the other hand, people have also said before that touching me caused physical pain. It didn't. I just didn't care for it. All that belief did was cause people to be overly careful around me and create an unnecessary distinction between me and everyone else.

A related frustration is when I read studies that are based on false assumptions. For example, the use of some chemical has increased, and autism rates are skyrocketing, therefore there must be some connection. Even worse is when the researcher acknowledges that there might not be a connection, but says that we have to relate it to autism anyway to get people to act. I find that to be highly disingenuous, and likely to negatively affect the researcher's credibility later, and it's insulting to us, as it reinforces the view that we're damaged people.

Are there problems or frustrations that come along with autism? Absolutely. Would I want to do away with them? Not really. I've learned a long time ago that the problems I have getting through life come with benefits that I would never want to be rid of. We all have problems as we go through life, and we all have talents and skills that come along with those. Mine are just part of the autistic experience.

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