Learning to let myself stim

About two years ago, I started EMDR in therapy. It’s intensive and exhausting, and it stirred things up in me that I was not expecting. I started age regressing after sessions for self-care, and one of the things I started doing instinctively was rocking. I didn’t think of it as a stim at the time, but I find myself doing it everywhere now. Waiting for a bus and I start stressing? Rock. Sitting at home watching TV? Rock. Out to dinner with all those lights and sounds and smells? Rock.

It settles me. If I’m anxious, it helps calm me and helps me remember to breathe. If I’m bored, it helps me feel like I’m doing something. If I’m tired, it’s like a gentle lullaby. With the pandemic and not leaving my apartment, save a couple trips to the ER/Urgent Care, for nearly a year, I became super comfortable rocking whenever I want. I used to be super mindful if anyone could see me and restricted how much I rock in front of people, but I’m kinda over that.

And it’s great because becoming comfortable with rocking is what has helped me discover and enjoy stimming in other ways. When I first started considering that I could be autistic, I tried some things out just for fun. I didn’t like hand flapping. That felt super awkward. But I do really enjoy flapping my fingers. It just felt natural from the start.

It’s fascinating to me. The more I allow myself to stim or just move my body in “weird” ways, the more I remember doing it all as a kid. I used to lie down and stretch my leg as much as possible while grabbing my toes and not bending my knee. (I don’t know if that description made any kind of sense, but we’re just gonna go with it!) I used to lie on the floor and shake the lower part of my body, like from waist down. I remember lying on the floor watching TV and doing it without realizing and my mom being like, what are you doing? And so, I started paying closer attention to what my body is doing so that I could control it better.

And now I’m learning not to control it, to let go, to allow myself to be fully authentic, even if I don’t know exactly what that is right now. A few weeks ago, I went to a thrift store. It was hot and raining and I was miserable, but I also love thrift stores and this one is kinda huge. I started stimming with my fingers while I looked at the shelves. For a moment, I put my hand down so other people wouldn’t see, and I thought to myself, what would I tell my child about openly …. and obviously stimming in public. And the answer to that is simply, if it’s not hurting anyone, do whatever tf you want with your body! And I put my hand back up to my shoulder, where it was originally.

I know that might not seem like a big deal to a lot of people, but it was huge for me. For me to consciously make the decision to not hide a piece of myself, to let myself look weird to other people. And it’s interesting because I’m definitely weird, and I own that, and I like it ….. but this is a different kind of weird. Being into sci-fi/fantasy and cosplay and all kinds of geeky shit, I’m already a “werido,” and I’m perfectly okay with that. Don’t like my style, don’t like my interests, ‘kay, no big. But for some reason, if my behavior looks weird or socially unacceptable ….. okay, like if I’m walking around Center City (Philadelphia) in the middle of winter with a TARDIS hat and a 4th Doctor scarf or I hop on the bus wearing my Winnie the Pooh pajama pants, Idgaf. But if I order weird in a restaurant (I don’t even know wtf that means …. but it is a feeling I have), then I’m mortified. Or if I don’t properly greet the bus driver. Or I say something stupid because I have so few filters.

It’s EXHAUSTING to be constantly aware of every little thing I do in order make sure I don’t say or do something that will draw attention to myself or make someone think I’m stupid or rude or annoying or ….. that’s really what it is. I put other people’s experiences, no matter how innocuous, above my very real needs, and I’ve been doing it all my life. Any little step I take to reclaim my body and my mind is a big fucking deal to me.

So, I’m learning to stim more openly and not give a shit what anyone thinks of it.

If I’m autistic, my kid is autistic

[Image: an apple that’s red on one side and green on the other still hanging on the tree]

Very shortly after recognizing that I’m probably autistic, I realized that my kid, whose nickname is Apple (and mine Tree) because “the apple doesn’t fall far from the tree,” must also be autistic. It was a Facebook post by Quirky.Stimmy.Cool., and the comment made by Autistic, Typing when they shared the post – “My kids were diagnosed late because I mostly understood them, ‘oh, I do that, too, no big deal.’” Wow, did that hit me like a ton of bricks. Now, instead of a poorly-edited montage of my childhood, I now also have a poorly-edited montage of my kid’s childhood.

So yeah, if I’m autistic, my kid is autistic. We’ll call them Apple for now (not because they want to remain anonymous, but for the moment, I do). Apple is genderfluid and uses all pronouns, but I generally stick with they/them/theirs in writing. Apple is 16 years old.

Apple and I were eating dinner and watching Fringe, our usual nightly routine. We had had a great day, both actually left the apartment …. to go get Apple’s covid vaccine. We were both in a positive mood (not common when we both struggle with multiple mental illnesses). The moment just felt right. I paused the TV, looked seriously at Apple, and just said, “Do you think you might be autistic?” The response was a pause, a curious look, and “Hmm, I never thought about it, but it makes sense.”

And boom! Now, my kid’s been cycling through their own poorly-edited montage. It’s kinda cool, going through this journey together, but there’s also the mom guilt that I should have noticed it sooner, that I could have gotten Apple better supports throughout school. But Apple is super talkative and very social when around the right people and articulate beyond their years and super empathetic and all of these things that we’re conditioned to believe are contrary to autism, but they’re not, not in the slightest.

Apple needs structure and routine. They get overwhelmed by lights and sounds fairly easily. They have trouble speaking when their anxiety is high. And, most importantly, everything we read about autism resonates with Apple, and it’s helping them make sense of their world, and I am so thrilled to be a part of that with them.

While I don’t think seeking a formal diagnosis will make any difference in my life, it’s important to Apple. So, this summer we’re working on finding the right doctor(s) so that Apple gets a valid and reliable autism evaluation. I am prepared for a rocky road, but even when I can’t muster the energy to do things for myself, I always have spell slots reserved for Apple.

This journey is exciting for me, but also frustrating and super overwhelming, but for Apple, it seems to be all excitement. This kid recently spent 10 days in a partial hospitalization program for their anxiety and depression. The partial was amazing and exactly what Apple needed. But obviously, depression and anxiety don’t go away after two weeks of intensive therapy. (Oh gods, I wish!) But this new realization that Apple is also probably autistic is helping them make sense of so many things. And I am told, Gen Z is much more accepting, so Apple doesn’t feel the same apprehension I have with sharing all of this. They even asked me today if they could a do a guest post on this blog, and I’m like, “FUCK YEAH, YOU CAN!” So, keep an eye out for that!

I try really hard not to put my burdens on my kid, while at the same time being honest about my struggles. It’s a delicate balance, and I know I don’t always get it right. While our journeys are certainly intertwined, we each have our own paths. It’s an interesting exercise in letting go and maintaining support at the same time. But Apple keeps me grounded, reminds me what’s important in life – family, friends, love, and joy.

***Apple read and approved of this before publishing.***

I’m probably autistic

[Image: landscape of a river or lake surrounded by green trees. The sky is clear blue with a few white puffy clouds. Text over the image reads, just breathe.]

It’s been about three months since I first asked my boyfriend, “Do you think I might be autistic?” And it was about three months before that when I first started tossing the idea around in my head. In the last six months, I have gone from, “I think I might be autistic?” to “Okay, I’m probably, almost definitely, yeah, I’m pretty sure I’m autistic.” I don’t know at what point I’ll cross the threshold to, “I AM autistic,” but I’m working on being patient with myself, a skill I am nowhere close to mastering.

I can’t quite explain what it’s been like …. reviewing my entire life like a poorly edited montage and going, “So THAT’S why I had meltdowns during every single family function!” or “Whoa! All of those weird little hidden repetitive things I did were ways for me to stim without being noticed?!” or “Yo!!!!! I’m not just some weirdo inept freak because I obsessively watched TV as a kid and learned how to be social by copying what I saw?” It’s been one hell of a ride that shows no signs of stopping.

About two weeks after I asked my boyfriend, I opened up to a friend who was super validating, and then shortly after to my therapist (who has known me for three years), and she came back to me the following session after having spent time researching late autism diagnosis, and said, “yep, you’re probably autistic.” Now, just a couple of days ago, I told my psych nurse, and while she doesn’t feel equipped to stamp that diagnosis in my chart (her niche is med management), she agreed that it made sense (I’ve been with her for two years).

But I still can’t bring myself to say, “I AM.” Imposter syndrome blows. I hear my father’s voice in my head telling me that I’m just looking for attention or making excuses or whatever else because I’m just a lazy piece of shit. I worry that by calling myself autistic that “actually autistic” folks will be offended and think I’m being appropriative. I worry that if I learn to unmask that people will think I’m mocking them or, once again, just looking for attention.

At the same time, EVERYTHING MAKES SENSE NOW! My anxiety makes sense, my depression makes sense, my mood swings make sense, my auditory processing difficulties make sense, my sensory issues make sense …. I’ve been placing all of these things under different files in different cabinets for years, but they all go in the same fucking file!

I feel like this might be my sloppiest bit of writing in years, but my brain is really sloppy right now. I am sitting on the floor of an unending hallway of filing cabinets with stacks of files spread all around me as I empty it all and reorganize. Deep breath and patience. This is a lot to unravel, and I have over 40 years of it. But this is an exciting kind of mess. Like when I get new sparkly crafty bits and bobs and I need to restructure my whole organization system. This is a lot more complicated, obviously, but there are still all the fun sparkly bits and bobs, and I’m going to take my time and enjoy this process.