In the few months after I learned I have Asperger’s, I was overwhelmed by the level of misunderstanding about autism prevalent not just in the general population, but with doctors and even parents of autistic children.
One major misunderstanding about autism involves the nature of our social anxiety. The fact that we have social anxiety does not mean that we don’t like to be around people per se, or that we won’t do things that involve groups of people. When I told my Aunt Cindy that I had Asperger’s and that I suspected her father also had Asperger’s, she objected that he went to church and was a member of the Audubon Society (coincidentally, I recently read somewhere that people with autism are particularly good at bird spotting). The fact that he was involved in a social group or two does not prove he did not have Asperger’s. The fact that in his diaries there is no mention of the births of any of his grandchildren, and the fact that on the very day I was born, he discovered the nesting site of the upland sandpiper in South Bend, IN (when most grandparents would have been at the hospital where their daughter was giving birth to their grandson), suggest he probably did have Asperger’s. My maternal grandfather was not particularly social, and the fact that he was a member of a club and a church doesn’t mean he was social. I was not only a member of several clubs in high school and college — I was elected president of the Association of Undergraduate Geneticists (AUG) at WKU. But I am definitely autistic.
Another example came from a question at the talk my wife and I gave on our experience with autism. A man in the audience was curious how it was that I could stand in front of a large group and talk. Well, standing in front of a large group and talking about something about which I am very interested is in fact pretty easy for me. In fact, you may not be able to get me to shut up. I am not dealing with people as people, but as an audience; I am not interacting personally, but rather discussing something I want to discuss. There is no small talk involved; there are few if any emotions involved. But when I go with my wife to our bimonthly support group at The Warren Center, I am extremely anxious. I have to chit-chat with people, I am faced with some pretty raw emotions at times from people having a hard time with what they and their children are going through, etc. But if someone asks me a question and I am in the position to talk about what I know about autism, my anxiety tends to dissipate. I can focus on the topic, and thus I am in a more comfortable place.
I have also learned to force myself to do social things even when I don’t want to do them. Again, it’s not that we don’t want to ever do anything social; rather, it is that we don’t want to do social things all that often. Sometimes I’m in the mood to hang out with a bunch of friends. Often, I’m not. But I learned that I had to agree to hang out when I really didn’t want to so that I would be invited to hang out when I did really want to. That makes me appear to be more social than I really am; in other words, I act more social than I want to act. And I do so to get what I want, not because I feel any social pressure. You cannot use social pressure on me to get me to do anything; that is the very last thing that will work on me.
Another misunderstanding involves the ability to look someone in the eye. Now, I do understand that there is a range involved, that there are those who are severely autistic who can never look someone in the eye. But what many people fail to understand is that there is, in fact, a range involved. More, I have learned over the years to look people in the eye when I talk to them. Again, it is not my preference to do so. But I do understand that it makes people uncomfortable if I don’t. And that can create problems for me. I used to look at people’s mouths, and I still often do. But I had several people complain about that and demand I look them in the eye. So I learned to look people in the eye. But to do so means I am consciously thinking about the fact that I need to look that person in the eyes. Often, when I am in a meeting, I will look at my notepad and generally avoid looking at anyone. But if I speak or am addressed, I will make the mental effort to look at the person. But it is a mental effort to do so. And it means you don’t have my full attention.
Finally, I have had people express surprise that I am a poet. I’m not sure why people don’t think someone with autism can be a poet. The singer/songwriter of The Vines and Courtney Love both have Asperger’s, and they write songs. So yes, it is possible to have autism and to be a poet. Perhaps it is because people with autism tend to be literal in their understanding of language; but in my case, that tendency to be literal with language has resulted in an interest in metaphors and other figures of speech. I often find what neurotypicals do to be of interest for their very oddity to me. And that strangeness of language use is particularly useful for being a poet.