I don’t know what to title this blog post. But it is a short one, so I’ll just go with that.
There are a number of common comorbidities to autism, and I am in the process of being evaluated for some of these. It will be a number of months before I get an actual diagnosis, because that’s just how backed up the system is, but I’ve taken the screening tests and I know my scores. That being so, I have a good idea what the results are going to be.
I scored very low on the ADHD test, I scored right on the line between mild and moderate on the OCD screening test, and I scored off the charts for alexithymia.
The only one of these that surprised me at all was the OCD test, but on reflection I’d say that’s just me being unaware. Apparently, not everybody has the unending internal dialogue that I thought was normal. Fortunately, my level of OCD doesn’t really interfere in my daily life. At least, I don’t think it does.
As for alexithymia, when I first read the definition, I knew that fit me to the nth degree. Basically, alexithymia is a difficulty in discerning emotions, either my own or other people’s. I’ve seen it described as emotional illiteracy. I remember once telling someone that if they gave me three days, I could figure out what I was feeling. I’m sure that sounded crazy at the time.
I experience emotions as physical things. My stomach hurts. My chest is tight. I can’t quite take a full breath. Usually, all I know is that I’m feeling negative emotions or I’m feeling positive emotions.
When Anju and I were out for dinner last week* I was explaining these test results and what alexithymia is, and her response was “Oh yeah Dad!’ So it seems this is much more apparent than I ever thought it was. I hope it didn’t make me a bad dad.
As for discerning other people’s emotions, I have these internal dialogs when I’m interacting with other people that might go “oh, his voice is going up and he’s making bigger and bigger gestures. I think he’s angry.” Often I’ve no idea why, so I just assume I did or said something in a way to make the person angry, usually unintentionally.
Okay, that’s it. Short and sweet!
* This was written last month soon after I got back to Tennessee after my trip to New England
Yeah, this is not news. I’ve always known I’m different. Sometimes to the point of feeling like an alien from another planet. And I suspect many of you have thought there’s something different, or odd, or whatever, about me.
He’s shy. Awkward. Quiet. Clumsy. He’s a loner. Doesn’t like people. He’s weird!
I’ve heard these things said about me. I’ve thought these things about myself. And more. So much more.
Here’s an interesting tidbit. Of all the people in my life; two parents, two brothers, two ex-wives, several girlfriends, a daughter, a passel of in-laws and nieces and nephews, friends, co-workers, etc., etc. Out of all those people, I can’t tell you what color eyes any one of you has. I never look at people’s eyes. I pretend to look at people’s eyes. I look at that general area of your face, and I sort of un-focus my eyes so I don’t have to actually look at your eyes.
I’m 64 years old now (brief aside: holy crap! How did that happen so fast?), so I’ve had a pretty long time to try to figure myself out. I’ve thought I’m shy, I’m an introvert. But I knew it was more than that. Then I researched Social Anxiety, but that still didn’t fit right.
About 5 years ago my doctor asked me if I’d ever been assessed for Autism Spectrum Disorder. Actually, whether he said Autism Spectrum Disorder, or Autism, or ASD, is completely lost to memory. His question rather took me by surprise. I told him I hadn’t, and he said I might want to do so. I told him I didn’t see the point. Even if I were autistic, what would be the point of getting tested? I’m not in school and didn’t need any kind of special accommodation. What difference would having a diagnosis make? And, of course, it’s an expense I didn’t need.
But that did set me off on a course of research and self-education. I read a lot about Autism. Then I discovered that various screening tests are available on-line, and of course I took all of them. Then I went to the source, and read the DSM-5 criteria for ASD. And the more I read and thought, the more it all fit. It just made sense. It explained so much of my life experience.
But thinking I’m autistic and knowing I’m autistic aren’t the same thing. I know there are many people who have never been officially diagnosed and feel confident saying they are autistic, and considering the difficulty and expense of getting an assessment, especially as an adult, I would never question them. But for myself, I came to think that I needed that official affirmation, that what I had come to believe about myself is indeed the truth. So I limbered up my credit card and paid for an assessment with a psychologist who specializes in adult Autism. And to my great relief, but not surprise, he confirmed that I am Autistic.
Up to this point I’ve only told a few people. And I’ve gotten a surprising range of reactions. I remember one person replying, “Oh no, you’re not autistic!”
On the other hand, when I was first coming to this conclusion about myself I mentioned it to Aoife, and she said “Oh, I’ve always assumed you were autistic and just didn’t like to talk about it.”
Interestingly, Aoife is the person with whom I have masked the least. She once asked “You don’t mask with me, do you?” And all I could say was that I don’t think so, but masking is such a default state that I couldn’t really say.
Masking is all the myriad things Autistic people do to try to fit in to the world. Things like pretending to make eye contact, and very deliberately trying to have the appropriate expression on my face to indicate that I am listening and interested in what you are saying, rather than my default blank expression. Not rocking back and forth while we talk. And a million other things.
When I was first thinking about writing this blog post, I logged onto a Facebook group for older Autistic adults which I belong to, and asked whether I should. Not one person said yes. In fact, they made very good arguments for not doing so. And I agreed with many of those arguments. I even said I didn’t think I was going to write the blog post after all.
And yet here I am, writing it. I do seem to like to go all in! I’ve decided that I want to unmask as much as possible, and see what life is like when I’m more my genuine self. I probably can’t totally unmask. Human society demands certain conventions in the way we interact. And maybe, just maybe, if you know I’m autistic, you won’t think I’m dumb when I don’t understand your jokes, or when I have to ask what “level up” means, because I process language very literally.
So here it is. I’m all out there. I’m Autistic. I know it, and now you know it. Nothing has changed; I’m still the same person. Yet everything has changed, because now I know. Whatever you do, please don’t feel sorry for me. This is great news! Learning about this is one of the best things that has ever happened to me.
I am well aware that I haven’t tried to explain what Autism is. What I’ve written here is about me figuring it out and a bit of what that feels like. I spent several years learning about it, but I certainly don’t expect you to do that! But if you are willing to devote 15 minutes and 31 seconds of your life, here’s a YouTube video that gives a pretty good overview.
