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What Is It Like To Have Autism?

Posted Jan 19, 2022 - 12:11pm

By Lance McLemore, PRC-Saltillo Blogger

Some of you all might be familiar with Special Books by Special Kids. It’s a series created by Chris Ulmer. He travels around interviewing children and adults who live with various disabilities, and then he posts the interviews on YouTube. I personally find those videos interesting and enjoyable, and I watch every one of them. He has interviewed several autistic individuals, and I remember him asking some of them: what is it like to have autism? That question stuck in my mind, and I started to wonder how I would respond if someone ever asked me that question. I generally don’t like open-ended questions like that. However, I’ve had a while to think about it, and I think I’ve come up with a good answer.

Imagine that you’re put on a plane and dropped off in another country. You don’t know the language, culture, customs, or anything else about this new place. You observe and listen trying to figure it out. It’s a puzzle that has to be solved. You look for patterns and try to extrapolate from those patterns the rules. You try to mimic what you see and hear, but your attempts are clumsy, awkward, and you usually get it wrong. And some people seem to take perverse delight in pointing out your failures. A considerable amount of time passes. You might make some improvement or none at all. Even if you do improve, this new culture is not your own, and it will never come naturally to you. Day after day the failures mount along with the self-doubt and anxiety. Everyone knows that you’re not one of them, and they always treat you like the outsider you are.

After a while you begin asking yourself, “why am I putting myself through this? Why am I twisting myself into knots trying to emulate these people when I almost never get it right? Why should I keep doing this when I get so little reward for my trouble? All I get for my hard work is anger, frustration, anxiety, self-doubt, confusion, and I get ridicule from people who have no understanding or appreciation for the effort I expend in an effort to reach out to them and to be like them.”

It seems natural that you would start pulling away from everyone and just focus your attention on the things that you do understand and find interesting. The outside world is scary, confusing, frustrating, and cruel. It’s best to keep it at arm’s length to protect oneself. And it seems irrational to keep putting time and energy into something when the result is almost always failure.

All this is my best answer to the question. I must point out that it is my answer and not everyone will agree. I read one of Oliver Sacks’ books. In it he wrote about his meeting with Temple Grandin, an autistic woman whom I’m sure many of you know. She told him that in regards to understanding the rest of humanity, she feels like an anthropologist on Mars. I completely understand what she meant by that. I’m often amazed by how easily most people can navigate the social world. They seem to understand it all instinctively. For most autistic people, it is very much like being an anthropologist on another planet trying to figure it out slowly and painstakingly. All the social rules are confusing and overwhelming. They are as numerous as the number of grains of sand on every beach on the whole earth, and they seem arbitrary and nonsensical. It’s like most people have been given a secret file, but some of us have been kept out of the loop. For us, it takes a lifetime of constant work to make any kind of sense out of the whole mess.

An autistic person is a foreigner in their own land. It would be nice if there was some home planet we could go back to, but there isn’t one. Instead, we live in a world that doesn’t seem like ours, it wasn’t built for us, but we try to get along as best as we can. Life is a series of puzzles to be solved, and it’s like everyone else knows what it’s supposed to look like in the end. Our struggling may be inevitable, but I think it could be lessened if more people had some understanding and compassion. As always, my goal is not to illicit sympathy but to increase awareness and understanding. Please be patient and understanding. We try hard to exist in this place, and we will often stumble and get it wrong. We’re not trying to be difficult. A lot of the time we just don’t understand what we’re supposed to do. Remember that however strange you might think we are, I can promise that you seem equally strange to us. Try to meet us in the middle, because we probably won’t be able to come completely over to your side. I often hear people touting diversity as a virtue; I think it’s time they actually practice it.

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Communicators In Action   -    autism, social, aac, communication, language, behavior, spectrum, disability