Discovering Neurodiversity in Myself and My Family

I was mindlessly scrolling TikTok the other day, and a video of a nurse giving advice about patient care came across my FYP. I immediately went down a rabbit hole of googling a bunch of the different information she was talking about, and before I knew it I had over a dozen browser tabs open and I was totally absorbed in learning about hyponatremia, osmotic demyelination syndrome, the neurophysiology of thirst, and on and on. I was sitting there looking at all my reading and I remembered how when I was a kid I used to LOVE to read a book my mom had about childhood illnesses, infections, injuries, etc.

I read the entire book over and over as a kid because I found it sooo interesting. I could study it for hours. It really helped with taking care of my siblings when they were sick sometimes too because I had essentially memorized a lot of the illnesses, symptoms, and treatments or at least knew exactly where to find the info in the book. I didn't realize that wasn't really a typical fascination that everyone had until recently. I used to get so confused when other people didn't know the same things I did, and especially when they didn't seem to even want to, because I thought everybody found it interesting and wanted to learn about it too. I ran into that with my near-obsession with studying pregnancy, childbirth, and lactation as well. I didn't understand how everyone else didn't want to know all this information, or even seemed bothered by it? And people I knew seemed weirded out or even concerned by how much I was interested in the medical details of it all.

I think I got a lot of my traits like that from my dad. :) He is a SUPER curious person. He loves to learn about anything medical, scientific, technological, etc. I had surgery for a tumor on the side of my head when I was 6 years old, and I remember my dad pointing out all the interesting stuff about the tests and scans to me, talking to me about the procedures and medications. I didn't feel afraid at all. It just made me curious and interested in the process. He didn't talk about it like it was something scary, just "Look at that!! You can see your blood going into the tube! Isn't that awesome???!" and it totally was to me. Thinking back, I'm sure part of it was that it was really interesting to him but also it was his unique way of trying to help me not be afraid. Its still how I approach medical situations for myself today. It didn't work on any of my siblings, and it doesn't work on my own kid either, but it totally worked well for me.

It dawned on me that this could probably qualify as a "special interest", and it probably worked for me because my dad and I share similar personality types, ways of thinking, etc. 3 of my 5 siblings have gotten an adult diagnosis of ADHD, autism, or both in the past few years. We all had a few conversations about it, and several of them brought up to me that they feel a lot of my traits and behaviors that my family struggled with in my childhood were probably related to me being neurodiverse also. We also discussed how both of my parents have a LOT of different traits of both ADHD and autism that affected the way we did things as a family, how we all related and interacted with eachother, and pretty much everything we did. Its SO interesting to me seeing all of our personalities and behaviors from another perspective this way. Its also really heavy seeing the way things could have been different, better, if all of us (especially my parents!) would have been aware of their neurodivergence and gotten support for their unique needs and found ways to make things work for them. I'm really glad it seems that a lot of us are doing this work now for ourselves as adults, and passing down that awareness and support to our kids. Already my own child and my nieces and nephews are getting lots of support that all of us could have used as kids. My mind has been totally blown by observing my kid and realizing that their dad has gone his whole life undiagnosed as well! I had absolutely no idea so much of his behavior was actually traits of the specific flavor of neurodiversity that they share until I started seeing the same patterns pop up in my kid that could not have been learned behavior. I used to be super judgmental about it, I didn't understand how differently other peoples' brains worked and I thought a lot of differences were just a choice or a character flaw. I learned first hand how wrong that is. So many of us have gone our entire life thinking that our different traits and behaviors were flaws that needed to be hidden or corrected. Some of it became the fuel for abuse and mistreatment by caretakers and people around us. We carried negative beliefs about ourselves into adulthood and it has held us back so much. I'm really hopeful that we're moving closer to a day when those differences and support needs are just part of the normal spectrum of human existence in society. Which really gets me thinking about how much work there is still to be done in disability activism. If you haven't seen it yet, Crip Camp: A Disability Revolution is still streaming on Netflix, and its an awesome introduction to embracing the diversity of human experience, and how we can make the world more accessible to everyone with all different levels of support needs.

Pride 2021

Pride has become super important to me. I've spent my whole life mostly lost in the closet. I'd peek my head out every so often, but then I'd go back in. When I was younger, I never felt like I fit well into any of the gender or sexuality labels that I knew existed.The cis hetero script society hands us didn't fit me, but neither did the definitions of being lesbian or a trans man, which were the first alternatives I heard about. I'd keep questioning those over and over and keep coming to the same conclusion. I didn't know wtf I was, so I just stuck to the default settings.

Growing up in an extreme patriarchal religion with strict gender roles complicated things a lot. So many of the choices I made were based on the limitations of what I thought was possible within that world. The constant message that masculinity was awesome but femininity was obnoxious and inferior both fed into and clouded the gender dysphoria I didn't know yet that I was feeling. Traditional feminine things often felt uncomfortable or uninteresting to me, so being told they sucked seemed like a benefit me...to a point. I was still labelled a girl and therefore was still subject to those same expectations and rules in the end-- everything you are and everything you do has to revolve around what men find attractive and acceptable. That was like a giant mile high concrete barrier I couldn't get past in order to "just be myself". It can feel impossible to tell where gender dysphoria starts and ends when misogyny is embedded in absolutely everything around you, and its equally hard to find your sexuality when your entire world is ruled by patriarchal heteronormativity.

Somehow, some way, over the years I've worked to dissect things and try to extricate myself from that mess. Sorting through the clutter little by little and finding treasure where I was told there was only trash. Discovering diverse and accepting communities online where people are safe to explore the nuances of their gender and sexuality has been invaluable. Visibility is LIFE SAVING. Its taken time for me to stumble across identities and words that seem to fit me better, like gender non-conforming and non-binary. When I found those, I felt like I'd found home. Sexuality was a bit trickier for me though. Religious patriarchy and purity culture is a traumatic MESS. Even outside of that though, nothing ever felt right. I remember being around all the women in beauty school and the salon and hearing them talk openly about their sexual attraction to men. I thought they were joking until I realized they definitely weren't. I was totally confused and definitely missing something. People have told me I'm obviously a lesbian in denial for almost my entire adult life. Mostly due to the gender non-conforming appearance I think? But every time I listened to bi and lesbian women talk about their sexual attraction to other women, it didn't resonate with me at all either. No matter how much I explored that idea, it just didn't click either. I'd always be left feeling like I must just be defective in some way. All my partners over the years seemed to agree. Both men and women were as frustrated and confused as me. Then recently, I found the asexual community. Suddenly everything made perfect sense. Sexual attraction is just not something I experience. I still find tons of people of all genders beautiful, dreamy. I can feel affectionate toward people I like. Without getting too TMI, I don't have any issues with my hormones or ability to experience pleasure. I can enjoy good sex as much as the next person. I just don't ever see someone and feel a sexual attraction to them. Never have. And that's okay! Finding that piece of the puzzle has made me so much more comfortable with myself.

In the past, I was so scared I would lose everyone I care about if I was honest about myself. I was scared nobody would understand. I was scared nobody would take me seriously or believe me. I was scared nobody would like me anymore. But having communities of people who can actually relate means everything. Seeing them helps me remind myself that I am valid. It can be so hard feeling like there's something wrong with you compared to everyone else. And I really have lost a lot of people I love in my process--partners, family, friends. It hurts and I miss them. It's hard to NOT feel like something is wrong with you when the most important people to you can't accept you. But also a bunch of you have stuck around and loved me all the more!! Some of you don't even know how much I've struggled internally with it all, to you I was always just me no matter what, and always worthy of love! I feel so thankful for all of you who have seen me and accepted me when I couldn't yet.
I don't want to feel like I need to defend and justify my existence anymore, to myself or anyone else. Its hard to erase decades of voices echoing in my head repeating all the criticisms I've heard, but joining together with supportive people to celebrate helps so much. That's why pride means so much to me.

Love,
Your local queer space frog