I was just diagnosed with ASD (Autism Spectrum Disorder) in December of 2022, a few weeks before my 58th birthday. I wrote about what caused me to seek this diagnosis here. I’m rather new at this stuff, and I’ll probably be blogging quite a bit about various aspects of it as I go along, reading and learning and wondering what this means for me. I suspect that quite a few other people are experiencing a similar thing.
Check out my autism category for a list of relevant blog posts, and never forget that 1) I’m just one person, writing about my personal experiences with a thing I only just learned I had. 2) No two people on the spectrum are alike. 3) I am not a medical or mental health professional. 4) I’m not attempting to write a one size fits all autism advice column.
I’m barely one month into my Autism diagnosis, and to say that the dust has yet to settle is putting it mildly. As a friend of mine said, this is a major sea change in my life. I naively expected the waters to be more calm, but I’m learning that sometimes they can be very stormy indeed.
So many of my friends and loved ones have been accepting and supportive. I’m really grateful for that. And I have a newfound appreciation for them, because I can be a lot sometimes. I always knew that, but I don’t think I fully comprehended the extent of my “differentness” until now. Being around me probably requires more patience than I care to admit.
I’ve been observing myself closely this past month. I’ll do something, and then I’ll ask myself, “Do other people do that? Have you ever seen anyone else do that?” And more often than not, the answer to both those questions is no. “That” could be anything from farting with impunity in public to running my hands through my hair when I’m nervous. It could be laughing when others don’t, and not laughing when they do. It’s definitely being bothered or delighted by things that other people don’t even seem to notice.
I guess I thought that the diagnosis would be The Answer. The answer to everything. And yes, it has provided me with a lot of pieces to the puzzle that I wish I had gotten decades ago, but it’s not as if anything has been “solved”, as in, “Okay, we’re done with that thing. Now we can move on.” Diagnosis does not equate to closure.
I can understand why so many adults don’t bother getting an official diagnosis. Much of the autistic community seems to accept people who self-diagnose, so why bother? There are plenty of books to read and groups to join, so many of us can still figure a lot of this out without professional intervention of any sort. And, I mean, we adults have managed to muddle through for this long, so it’s not like a diagnosis is mission-critical.
But for me, this diagnosis has helped me figure things out. For example, I’m starting to accomplish more, because I’m breaking tasks down into smaller pieces. I still plan out the entire task, but then I focus on the first step, then the second, and so on. I’m not as likely to be overwhelmed to the point of paralysis that way. That’s a good tool to have in my toolbox.
I wanted an official diagnosis because, silly me, I thought having something in writing would make the more hesitant people in my life believe in its authenticity. “See? Here’s proof. I haven’t been having tantrums all this time! I haven’t been acting confused to somehow manipulate you.”
But no. Not so much. I now realize that the hesitant people are heavily invested in the lens through which they’ve always viewed me, and just as with Trump supporters, no amount of facts are going to make them see the light. It makes me sad, but I don’t know why it has come as such a shock.
Another thing that I didn’t expect was how uncomfortable it makes people to talk about my diagnosis. If I bring up the subject, then clearly I’m comfortable talking about it, and I am hoping people will ask questions. But most people seem to squirm, especially if I’m talking to them face to face. That, too, shouldn’t have surprised me, because I now realize that I would have reacted the exact same way prior to my diagnosis.
The unknown makes people very nervous. And it’s astounding how few people know anything about autism. It’s a hard disorder to define, because there are so many potential aspects to it, and so many degrees of intensity for each of those aspects. No two autistic people are alike. Since that’s the case, autism doesn’t fit into a neat little box. It can’t be described in an elevator speech.
And I’m having to confront the fact that I’ve carried around my own prejudices about autism. I thought that most autistic people were incapable of empathy or emotion. I can’t speak for everyone, but it’s more like I feel so much more than most people that it often overwhelms me. I’m not some automaton. It’s as if my nerves are jangling so rapidly that their motion can’t be seen with the naked eye, but believe me, I feel them. I’m here. And there’s a lot going on beneath the surface. I’m only just now realizing that not everybody feels this way.
I’m thinking of making a t-shirt that says, “Autism. It’s complicated.” Hmmm. Maybe I could sell them.
I’m only now starting to realize how few services are available for autistic people who have only just discovered this about themselves late in life. Naturally, the focus should be on autistic children who still have their whole lives ahead of them. I get that. But I’m not done with my life either, and I sure could use some support. I’m still working on that, but I can’t imagine how someone on the spectrum who is less verbal would be able to get past all these hurdles. It’s not easy.
I was utterly unprepared for how much of my life would get stirred up by all of this. I’m an autistic person. I don’t need to be fixed. But now that I know so much more about the how and the why of me, I’m setting firmer boundaries with people, and I’m getting mixed results.
I’ve been struggling my whole life to seem “normal.” Now, I’m saying things like, “All this noise and activity is overwhelming for me, so I need to go off and have some alone time for a while.” And, “I know you want to go to this party, but I’d rather not. Please have fun without me.” And, “I really enjoy hanging out with you one on one. Let’s do more of that.”
An exciting aspect of all this insight is that I’ve got a stronger sense of what makes me comfortable in any given environment, and what really, really bugs me. It will be interesting to see if I begin to feather my nest in a different way due to this knowledge.
Now that so many people know this fun fact about me that I’ve only just learned about myself, I can sense them watching me. I don’t think they’re worried that they’re going to “catch” autism as much as they fear that I will stop being me. Am I supposed to bulk up and turn green like the Incredible Hulk? I don’t know.
I’m still me. Yes, I’m an autistic person, but I have always been that. It’s just that I didn’t know it until now. I feel increasingly authentic. I can stop trying so darned hard. I can maybe cut myself a little slack.
Breathing room is a very precious commodity. It’s nice to have that. A door has been opened wide, and the fresh air is coming in. I’m sure I’ll have good days and bad days. But at least I finally understand that the ability to breathe is out there and within my reach. I may not breathe the way you do, I may not yet breathe the way I’d like to or the way I should, but, yo, I’m breathin’ here! That counts for a lot.
I wrote an actual book, and you can own it! How cool is that? http://amzn.to/2mlPVh5