Autism Part Two (And Likely The Last About It)

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Well, it sure took me longer to get back here than I thought it would! The construction that I mentioned in my last post (which was supposed to have been finished over 2 weeks ago), is still a thing. Between items the crew needed to complete the job not being here (and there’s still one outstanding), and one of the rooms which was “done” springing a leak in the ceiling, it has been so disruptive. There have been a few other things going on at the same time as all of this and it has all collectively kept my energy levels in the red zone. I didn’t want to let this post be on pause any longer though, so here I am. I’ll be talking a bit about the things which were there all along with me which, looking back, make autism a pretty clear thing. Plus, mix in a little ADHD, and the two of them warring against one another, the confusing mess which has been a big part of my life is really coming into focus.

From the time I was very small, I can remember feeling so out of place and uncomfortable around groups of people. There are a few reasons for that, and none of it has anything to do with being shy, as I was labeled by the grown-ups who knew better. The issue is that I cannot focus when multiple people are talking at the same time. It is impossible for me to keep up and catch even half of what is being said. Between too many voices at once, and the often rapid fire topic changes, it just makes me shut down and wait until the soonest available exit point. I can remember recess in elementary school being such a nightmare. Far too loud, way too many things being said (or screamed) at once. You could always find me at the furthest point on the playground that I was allowed to go, just so I felt like I could breathe. There were a few times that a teacher would keep me inside during recess, as a punishment. Haha, joke was on her, because for me sitting in a quiet room reading a book was a dream come true.

Another aspect of socializing when I was young, and even today, is that I’ve always had a rough time with small talk. Can I do it? Yes, when I have to, but I would much rather talk about “nerdy” stuff than about the latest trends, or who is doing what. This is a huge hurdle, because admittedly the topics that I am the most truly interested in are pretty specific. I will say though that any topic which has some depth is something that I can work with in interactions with others. This isn’t to say that I dislike being silly and having fun, because I most certainly do. It’s just the very surface level small talk that I just cannot stand to do, and often do not. When I feel I have to though, it’s for the shortest amount of time that I can get away with without coming off as completely rude.

Another sign was that even as a very young girl, I kept my room spotless. I still keep my place very neat and tidy. It isn’t a matter of being a “perfectionist” or “neat freak” as some have quite rudely accused me of. For me, it is one way that I can feel more calm. If things are tidy and uncluttered I feel more at ease. However, when I am in a place that is very cluttered, messy, or actually dirty I feel claustrophobic, as though I can barely breathe, and just want to escape. It makes my brain feel as though it’s spinning a million miles an hour. I think it’s because there is both too much and too little to try to focus on at the same time.

Another was the need for soft comfortable clothes. Did I always have them? No, and I get that it isn’t always possible. I just remember suffering a lot with clothing that was stiff or scratchy, or that had thick seams that you can feel or horrible, stiff tags. I’d walk through clothing stores (when I got old enough to pick my own) feeling before looking. I didn’t realize that this was weird until a friend pointed it out and asked me why I did that. The answer was that I didn’t see the point of looking at something that felt wrong. Everyone doesn’t do that? Oh, just me? So. Many. Signs.

A few more were bright lights (especially fluorescent), loud noise levels, having too many people too close to me, being interrupted mid-task and not being able to start back up, walking on my toes when I was little (had to force myself to learn not to do that due to bullying), various little habits and movements that I didn’t realize were stimming, and more. This is already getting long, so I’m going to touch a little bit on the differences between autism in girls and boys which leads to later or missed diagnosis in girls.

Girls are taught to conform, to be nice, to like certain things, to act certain ways. It isn’t that boys aren’t also expected to behave. It’s just different. Plus, there are the special interests which in girls are usually more socially “normal” and therefore go unnoticed (even though the amount of focus on them is higher than the norm). Of course there are outliers. These are just things that are pretty well documented and worth mentioning. Plus, the way that girls socialize in general is very different than the way that boys do. We are more prone to be social chameleons in order to fit in. Another note about socializing, which was such a comfort to me to learn, is that autistic people DO want to socialize sometimes. It’s just that we often truly cannot because we are already in burnout or simply exhausted, or that the setting is one that we just cannot be comfortable in. In my own life, I have said yes to things so many times only to have to turn around and cancel at the last minute either because I am burned out or am sick in relation to a chronic illness. This has created so much trouble. People have thought that I don’t want to talk to or see them and that just isn’t the truth. I simply do not have the bandwidth. I have stopped trying anymore with that, because the burnout is so severe, and I am tired of being yelled at or scolded or accused of lying or making stuff up to “get out of” spending time with people or being told that I have made them feel as though I don’t want them around. I have always done as much as I am able to, and for many it isn’t sufficient. Not only that, but when I felt that I finally could (with clear parameters which we mutually decided on), I ended up being roped into way more than I had agreed to. Even though I didn’t have a name for it, I have always been transparent about what I was feeling like and could do. Fuck that! So for now, I am not attempting to placate people who do not wish to understand. Right now, priority is on recovery. Maybe I’ll try to venture into people-ing again when things are better. Then again, maybe not. I might be too busy finally being able to be myself and dive into what makes my soul happy.

I did mention ADHD above and how the two war with one another. Briefly I’ll try to explain a few aspects of it. Autism side has a hard time getting started on things, ADHD side kicks in and says let’s do this, autism side says ok, someone interrupts and the whole thing comes crashing down (and who knows when the autism side will be able to get going again, because focus was lost and switching tasks unexpectedly created exhaustion and/or overwhelm). Autism side needs a feeling of routine or predictability in order to regulate, ADHD side wants adventure and novelty, autism side gives in to that (and probably even has some fun), but sometimes before the adventure is even over the autism side is shutting down and ready to crash. There are more examples but to try to keep it brief, I just named a few. That’s really about all I feel the need to say about all of this right now. I encourage you to read or learn more about it if you recognize yourself or someone you care about in some of this. It is life altering, and being so new for me I am still trying to find my way. However, just having the knowledge and recognition about some of the things which have confused and made me feel like a failure is very comforting and gives me hope that I’ll be able to create a life that actually works for me instead of against me.

This will likely be my last post about this topic, unless something comes up in the future that feels super important. Next time you see me I’ll be posting about other things such as creativity, spirituality, or just random little things I find interesting, kind of like this space used to be. It will be slow going for a while as I am still in severe burnout, and not only trying to recover parts of me which I allowed to be squashed, as well as discovering who I really am underneath 50 some years of masking, conformity, and frankly defeat. Thanks for reading this, and sticking with me! See you next time.

Checking In

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Things have been so busy, that it hasn’t been possible for me to come back since the last post. There really isn’t a topic today, but I didn’t want to let too much time go by. I’ve been wishing to be here more regularly for quite some time, and the goal is to make that happen. In the last one, I made a post about getting a late in life autism diagnosis and I will be making a post soon about the different things which were clues, but were missed as promised.

Since I was here last, I got a notice from my landlord that there would be a construction crew in my apartment this week to completely redo the bathroom. Week before last, they did the other bathroom, so I didn’t expect them to come back so soon. It’s a good thing that they are back again for a few reasons. First, is that they will be done with my apartment after this week and I can get things back in order. I’ll be so glad when that happens, because having so much disorder and mess is driving me up the wall. Second, is that having remodeled bathrooms is great, as the ones in the building now were likely about as old as I am. I spent the weekend getting things ready for this work to be done. You don’t realize how much you have to do until you’re going through it. Lots of stuff to be moved, and covering all of the furniture that’s near the bathroom to keep all of the dust off. I learned that lesson the hard way with the first one.

Then on Sunday, I came down with a pretty nasty upper respiratory thing. It started on Saturday evening, but really hit on Sunday. Since then I’ve been trying to take care of myself to get well. On top of that, I am still processing the autism diagnosis and attempting to take measures to get out of a burnout state from continuing to push for so long. Needless to say, having all of that going on this week hasn’t been the most conducive. It hasn’t been all difficult though as I’ve had plenty of time this week to lay around. Yesterday I slept off and on all day, in between doses of cold medicine which was most welcome as I haven’t been sleeping well for a long time. Today might be more of the same, which would be fine with me. I am feeling a little better though, which is why I wanted to give a little update here. Time for more cold medicine, so I’m going to wrap this post up. I’ll be back again as soon as possible for part 2 of the autism post (unless something else strikes my fancy in the meantime), then some other ideas which are not autism related. This blog is and always has been a mixed bag of things, and I’m going to keep it that way. See you next time!

Autism Diagnosed In My 50’s?!

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Buckle up, this is going to be a longer post. Before I begin, I want to note that this is geared to woman specific problems with the topic but it is in no way excluding men, because they are missed until later in life too. Just not to the extent, and for different reasons than women are. Plus, this is my experience that I’m writing about, as a woman.

  • As I was writing I noticed that the post was going to be entirely too long, so I’ll be splitting it into a 2 parter.

In this past week, there have been a lot of big things going on. The biggest one is something that’s been coming for a long time (since birth and I just didn’t know it). I was scheduled to get adult autism screening back in 2020. We all know what 2020 brought to the table. Needless to say, the screening was postponed due to the lockdowns and subsequent changes as things slowly began opening back up. By the time that happened, I had decided that even if I were autistic that I’d been managing okay (or so I told myself) for what was almost 5 decades and didn’t go through with it. Part of it was that I really did think I was muddling through alright most of the time. Looking back, I see that a big part of my decision not to do it was that I didn’t want to know. Not that I would have been ashamed of it, just that I didn’t think that finding out so late in life would help or change anything.

Fast forward 6 years, and I had to acknowledge that I wasn’t bouncing back as I always had after periods of high stress and/or overworking. There was a building worsening when it came to handling things well. I will say that this particular period of stress went on for close to 5 years. There were stressors that lasted for the entire 5 years, and other major ones which just kept coming. It has been relentless. I attributed my worsening health entirely to those stressors. Well, things finally boiled over to the point that I was rapidly becoming unable to function, physically and mentally.

There was one particular change in myself that caused me to see that not all of what I was experiencing could be chalked up to my chronic health issues. I began to have meltdowns, and I mean MELTDOWNS (which I never really had before).This brings us to this week. Over the past week I have taken the entire battery of testing. Even though I’d been (kind of) diagnosed, it just wasn’t official until the full testing process. I had told a few people that I had been diagnosed, because I was almost 100% positive that it would turn out that way, and I wanted to test the waters to see how people in my life would react and to see how I would feel in personally accepting neurodivergence.

As suspected, it turns out that I am autistic. I likely have ADHD too, which will be determined for sure after something is explored (my lack of sleep). Of course I did want to share this as it explains the main reason I haven’t been able to write and do art (I’ve been so hard on myself over this). The biggest reason I wanted to share is that women have always had a harder time getting an autism diagnosis because the testing was geared toward how it presents in males. It is getting better for us though, as it has been discovered that girls/women present much differently, therefore we were missed and often misdiagnosed with other things. There are still a lot of clinicians who tend to lean into the criteria that fits males though, so it’s important to find someone who acknowledges those differences and has experience in diagnosing both adults and women. I got extremely lucky in that regard.

This has been eye opening to say the least! I’m still a little shocked (even though I expected it), and feeling overwhelmed at the necessity of learning how to live as an autistic person. I know that it’ll help me to find myself (which is something I’ve never fully been able to do) and create a life around this knowledge which will finally give me a chance to thrive (more than I ever have at least). First thing though will be getting through autistic burnout which has building for decades and I’ve been told can take a very long time (hopefully not). This means complete self care which is going to be a tough one for me. It has been getting easier to say no even before now. Just not nearly easy enough yet (I’m so used to pushing through stuff). I will be writing a part two which will go into the things I’ve experienced that pointed to autism all along as well as highlight the different presentations in women. If you’ve struggled through life and no one has been able to tell you why, you just might recognize some of the signs and start the process of finding out if this is it for you as well. The next post about this will be coming soon. I will try to make it shorter (no promises though haha).

See you next time!