"I can't deal with this and perimenopause"
Beyond the Book: Blackness, hormones, and being diagnosed Autistic at 43
Me: “So I’ve been thinking of getting evaluated for Autism.”
Therapist: “Why are you thinking of getting a diagnosis at this stage?”
Me: “Because I’m neck deep in perimenopause and I’m not sure what’s that and what is ADHD and what is whatever else is happening with my brain. All I do know is that I can’t deal with it AND perimenopause without more information.”
And thus, a little over a month ago, I began this journey that changes everything and also nothing. I’m still wrapping my head around it all. I’m not even sure what I want to write here. It’s a big deal and also, it really isn’t. So I guess I’ll just talk a little about where I am right now and why.
But let me rewind a bit first.
I was diagnosed with ADHD in my mid-thirties, after both of my children were diagnosed. Even though it should have been a pretty easy process - I don’t think anybody could have denied the symptoms that I have, or at least that’s what I had thought - it was a pretty shitty experience. The specialist (a white man) I was referred to didn’t seem to take me seriously and asked if I’d considered losing weight first. I was constrained by my insurance and provider network and just wanted to get through the process. I answered all the questions, attended the weeks of sessions, and eventually got my diagnosis and prescription and swore to never go through that again.
As awful as getting the diagnosis was, having the diagnosis did wonders for me. It allowed me to finally set aside the idea that if I just tried harder I would suddenly have robust executive function. It allowed me to stop focusing on the things that I wasn’t ever going to be good at, and instead focus on what I was really good at. It allowed me to be kinder to myself, and set a healthier example for my kids. I was able to build processes for myself that actually work with my brain, instead of against it. My ADHD diagnosis has gone far in improving my mental health, my career, and my relationships.
In the years since, any way in which my brain worked differently than others was filed away in my “must be ADHD” folder. But as my career grew and I found myself in more and more situations that were well outside of my comfort zone, I found that a lot of what was happening in my head seemed to lie outside of the “ADHD” zone.
My younger son is Autistic with ADHD. We’ve known this since he was 8 years old. But since Autism also is found throughout his paternal line, it honestly never occurred to me that I might be Autistic too. Every trait that my son and I shared, I chalked up to “ADHD stuff,” even while he argued with me that it was actually “Autism stuff.”
As a writer, I’ve been able to structure most of my days around solitary work. This is great for me. I’ve never been a very social person, and a night out with a group of people has never been my idea of a good time. But as my work became more popular and more public, I had to become more public as well. My anxiety started increasing exponentially, and it was showing in very physical ways. I started going to therapy a few years ago, to try to understand it more.
But it wasn’t until about 6 months ago that I started really looking at my social interactions and I started to suspect that maybe it wasn’t all ADHD. I started realizing that in conversations where I wasn’t comfortable - even in conversations I really wanted to have with people I admire - I started to feel very frantic. I would fidget incessantly, I would talk so fast I would be lightheaded, I would be unable to engage fully and make eye contact but I also wouldn’t be able to sit in silence for more that 3 seconds without wanting to tear my skin off, I would be aware of every fiber of my clothing and it would feel unbearably irritating to me, I would want to run out the door. And the entire time in my head would run a dialogue: Smile now. Make eye contact. Stop talking. You’re talking too much. Do they look mad? What time is it? Are you going to pass out? Stop talking. Ask a question. Did you acknowledge what they said? Make eye contact again. Stop fidgeting. Oh no, don’t start shivering, it’s weird. It’s 70 degrees in here. What is that buzzing noise and why does it hurt? Oh for the love of gawd stop talking.
Eventually I would run off to the bathroom to catch my breath and try to get my shit together. Often after these interactions, especially ones that lasted longer than an hour, I would start shivering uncontrollably and then feel like I needed to take a nap right then. But then I would start thinking about how very weird I had just been for the last hour. And I would beat myself up for three days and swear I was never going to be around people ever again.
I started to work with my therapist on ways to make these sorts of interactions more bearable, if not pleasant for me. And it has helped. I set time limits, excuse myself more often so I’m not so overstimulated, I try to set up social gatherings in places where I can easily move around or have access to outside, I’ve started bringing earplugs with me to cut down on electronic noise from speakers and the like (which cuts into my ears like nails on a chalkboard when I’m over-stimulated), and I’ve allowed myself more rest after these interactions.
And while this all has been more helpful, and I’ve been able to spend more time with people I like and love, I really wanted to understand why. Why was I like this? Not understanding why and how my brain worked made me feel very unsafe around people, and I found that - especially in conflict-rife movement spaces - I wanted to completely isolate myself rather than let my lack of understanding of people’s motivations and social expectations put me in a vulnerable position. Even though I was working to be able to be around friends and family more, I became increasingly anxious at the thought of collaborating or working with others.
This is not how I want to live. I believe in community and I believe in collaboration. And as I came to terms that I was indeed also dealing with perimenopause symptoms that weren’t going away anytime soon, I figured that more knowledge about why my brain and body were doing what they were doing would be my strongest weapon in getting through this years.
So that brought me to finally broach the topic with my therapist. I wanted to give them a heads up that I was going to try to seek diagnosis, and that if it wasn’t Autism (I was very open to the idea that it might also be another complex trauma response) I’d be coming back to them to try to work on that.
And that’s when my therapist informed me that they were not only qualified to evaluate me themself, they also did a lot of work with Black Autistic people.
I kinda wish I’d brought it up two years ago. But here we are.
The evaluation process went a lot easier this time around, as you can imagine. And we’ve spent the last few sessions talking through the things I’ve been realizing about myself since receiving my diagnosis.
My therapist pointed out to me that Black people are exceptionally good at code-switching and masking for survival, and that Black women have an especially high expectation that they will suppress their needs for the comfort of others. So it isn’t shocking that I’d just now, after all this healing work, be broaching this topic with myself.
I’m realizing how much I’ve ignored my noise sensitivity, touch sensitivity, smell sensitivity, texture sensitivity and more - even as my discomfort made situations unbearable. I would just try to white knuckle my way through it and then suffer the consequences. I’m realizing how frustrated I get when I can’t logic or explain my way to a solution to conflict, and I’m now trying to make peace with the fact that sometimes people do things that don’t make sense to me. I’m realizing how often I feared I was actually going crazy, when I was really just experiencing overstimulation and had forgotten how to soothe myself in those situations. I’m realizing how often I’m deeply uncomfortable and how rarely it has occurred to me that I deserve the same level of comfort that I work so hard to provide for others.
Every realization I make, I’ve been sharing with my partner with a sense of wonder. And he, who was not at all surprised with my diagnosis, has been enthusiastically supportive of the entire process. It’s been so affirming to be able to say, “I know I often say I don’t want to watch tv, but what I really mean is that I do want to watch tv but I can’t cuddle and watch tv, because it’s just too much stimulation,” and have him get it right away and be on board with waiting until the show is over to cuddle. When I need to be alone in a dark room, he doesn’t take it personally. When I need to walk out nervous energy, he’s always down to go with me if I want the company and down to stay in if I don’t. He’s been curious and respectful and has been a huge part of why this whole process has been affirming instead of scary, and why it’s a big deal, but also no big deal at all.
So yeah, that’s an update on me. And it’s weird to write about right now, so I’m not going to proofread it. So you’re gonna have to find a way to deal with any typos. If you want more writing on this as I continue on this journey, let me know! I love you all. Thanks for being here with me.
Teary recognizing me and my AuDHD family in your sharing. So grateful you are caring for yourself in this way 💞
Thank you so much for writing this and sharing it - I would definitely want to hear more in future posts! I see a lot of myself in what you're sharing, and wow, perimenopause definitely complicates things for sure!