A Late-Diagnosed Autistic Memory Spiral

And what I've drawn in the meantime

I couldn’t quite manage a post and an audio recorded Coffee Chat this month, but I hope this note will do for both (for now). I kept planning other, different Substack posts and overwhelming myself into not doing anything at all here for a few weeks. Thanks for being so patient waiting for posts and comment replies in the meantime. Please know I don’t take you for granted! I truly appreciate you being here, and sticking with me. Thank you!

When I sat down to write this post, I kept trying to make myself be okay. Somehow it felt like that was the only place I could start from—or at least, the only place I felt I could properly start from. That, in order to write something acceptable, I had to be okay.

As a late-diagnosed, highly masking Autistic person, I’ve spent a LOT of my life trying to be okay—or at least trying desperately to appear to be. Smile enough, do all the things people would expect you to do if you weren’t struggling so much, don’t answer too honestly when people ask how you are…and so many more little, often unconscious, ways to pretend.

And I’m tired.

And it occurs to me that if you’re here reading this, you might be Autistic, too, or maybe care about someone who is, and therefore won’t benefit from me pretending I’m okay any more than I will. Not being honest about how we’re really doing just makes us all feel more alone in the world.

So here it is: I’m not really okay.

I will be, someday, don’t worry.

But not today.

And probably not tomorrow. Or the day after. Or maybe for weeks after that.

And that’s just part of dealing with lots of big life change for me right now.

I’m so thankful for our situation. We’re so privileged to be moving into a new home, to have new jobs. There was a very recent time in our lives I could never have imagined any of this was possible, and I’m still surprised it is.

I’m so grateful…

…AND I’m also completely shaken by all the change, and both of those things can be true at the same time.

When I sit down to plan out Coffee Chats near the end of the month, like I did as I prepared for this post, I always consider what I talked about last time, and what I’ve gone through since, and maybe what lessons I’m learning as it all happens, to try to make something of it that might be helpful for both of us. Last month I talked about living in the in-between times, and trying to keep myself from putting my own life on pause during the waiting phase of buying a house. I think if you had asked me at the time, I would have said I thought that moving into our new-to-us, 1850s-schoolhouse house was the start of a new chapter and that’s what I was waiting for—for that new chapter to start. That probably the waiting feeling would end there, once we’d unpacked.

But now that we’re here, settling in (or trying to), I’m finding myself in the middle of another sort of waiting game—waiting on my Autistic brain to accept the change.

I’m learning just how hard change hits me. I’m looking back at previous times in my life when there were big changes, and recognizing the signs I never knew names for back then. Since I first started researching Autism, and wondering if that was finally the word I could use to describe my experience, I’ve come to be very familiar with this process—the never-ending spiral of returning to memories and moments from your own life you thought you had logged, processed, understood, and filed away neatly in the archive of your mind. The way things circle back around, again and again, and you pore over each memory for the millionth time with new eyes and see everything completely differently, decades later. And each time, you think “Ah, now I see it. Now I get it. That was me being Autistic in this way. It all makes sense now,” and you put the memory back in its place—only to have it back out again with yet another revelation 6, 8, or even 12 months later. It’s actually very similar to the same process understanding abuse and trauma in your past, too.

There’s another Circling Back Around that tends to show up in this Coffee Chat monthly review. I notice, when I hold this month up next to last month, and the month before, that there’s often a lot of Not Being Okay. And I’ve historically mostly seen that pattern as a kind of failure (especially before learning about my trauma, Autism, and ADHD). It’s hard to shake that feeling, that guilt, that things should be on an upward trajectory all the time, and I think that’s probably true for many of us.

Even if I were neurotypical, it would be completely 100% okay for me to not be okay often. Repeating. Sometimes for extended periods of time. We all go through times like that, and life has a way of making us all feel like we shouldn’t somehow.

But I’m also not neurotypical. And just like with those late-diagnosed Autistic memory spirals, I’m keep coming back to new levels of self awareness, self acceptance, learning and unmasking. Times where it hits me how bad it is for me and you and everyone if I keep expecting myself to be okay, or putting some kind of mental time limit on how long I’m allowed to Not Be Okay. That kind of thinking is ableist and unkind to myself and others, and—just on a really practical level—not even helpful.

I’m Autistic. Change is especially hard for me, and it is for a lot of Autistic people. These are facts—not things to apologize for. (I’m trying to cut back from about 100 apologies a day to at maybe 25. Baby steps.)

Thank you for your patience while I ride these memory and learning spirals, and hold myself together and try to find routine in a new space. While I bring myself back to center, and slowly stop feeling quite so lost in my own life.

What I’ve made anyway:

And in the meantime, I wanted to share what I have created in this time—to celebrate that I’m still me in the middle of Being Not Okay, and I’m still creative, even if it looks a bit different during these times.

The night before we put in the offer on our house, I couldn’t sleep. I finally got up around 4am and drew this picture of our (future) house, trying to focus on the safe feeling I got while viewing the house and not on my anxious thoughts buzzing and second-guessing and panicking about such a big change.

I included the illustration with a letter to the former owners, and apparently it made them cry (in a good way), and they knew right away they wanted us to be the next caretakers of this old home!

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Our wonderful realtor’s dog passed away unexpectedly just before we closed on our house, and I drew this portrait of him for her, printed as a Polaroid, to celebrate his life.

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I did some (very rusty) sketches the other day while watching a comfort movie, The Secret Garden (the 90s version I grew up with!). It’s so hard to put pencil to paper on tough days, but I find if I push myself just a bit and try to let my hand move however it wants to instead of forcing a particular kind of drawing, by the time I’ve made it through a page like this, I feel a bit less rusty, and a little more like I might still be an illustrator deep down in there somewhere.

I hope you’re all doing well, and celebrating summer sunshine wherever you are, and if you’re not okay, I’m sending you a smile and a hug if you want it. I promise you’ll get through this. We can ride it out together.