7 Things I Wish I Knew in My Early Autistic Revelations
More wisdom is welcome in the comments!
I was diagnosed with level 2 autism around three years ago, at the ripe age of 37 years old. The adverse aspects of being autistic — specifically extreme sensory issues, markedly increased difficulty communicating, and terrifying meltdowns — had left me desperate for answers, so going through the self-diagnosis process, learning what autism actually is, getting info from autist-led organizations, and connecting with other autistic people was a savior. I’d felt far from normal my whole life and hadn’t even been able to pretend it for years, so it made me feel like I wasn’t a lunatic-alien-person…I was just autistic!
It had a name. A name that comes with a community that speaks my language, understands the life-ruling struggles others had labeled with words like ‘bizarre,’ and has advice for how to deal with it all. Though I fully recognize the validity of self-diagnosis, I needed a formal diagnosis to help quell the all-too-loud naysayers in my mind, echoes from decades of people trying to convince me I was just lazy, dazy, or crazy. And it did.
But after a year or so of elation, I started to realize that knowing the reason for these struggles wasn’t necessarily helping me cope with them, and that I had some pretty unreasonable expectations for how my autistic revelations might change my social and neuro-functional experience (and how quickly). So, in the hopes of catching someone earlier in the process, here’s 7 Things I Wish I Knew in My Early Autistic Revelations:
- BE GENTLE WITH YOUR BRAIN: Processing a developmental diagnosis when you’re done developing is, well, it’s a total mindfuck. There is soooo much to learn, and your autistic hyperfocus is probably at full steam, but it’s crucial to pay attention when doing simple things (like reading) starts getting harder — it means your circuitry, your brain and nervous system wiring are overwhelmed and could shut down on you. It’s called autistic burnout, here’s an article all about it, but it’s basically when all the bummer parts of being autistic skyrocket and you lose access to much of the good stuff. Going into it is what made me start finally accepting I wasn’t “just HSP,” but after months of excessively hyperfocusing on learning about autism I sent myself so, so, sooo much further into au burnout. (I miss light, I’m so very tired of being in a dark apartment alooone.) So, it’s important that we’re honest with ourselves when we start to feel overwhelmed; pushing through it can have more severe consequences for us than allistic (non-autistic) folks, severe and painfully long-lasting.
- IT CAN BE AN EMOTIONAL ROLLERCOASTER: Elation may turn into grief, as there’s a lot of mental and emotional stuff to unpack. For me, I’ve had many buried memories come up, things I wanted to believe didn’t happen, as well as events that I’d positively, but falsely, reframed becoming clear in all their pain and embarrassment. Honestly, I had a couple of mental breakdowns about it. It’s okay to grieve the way you thought things were, it can be part of coming to understand and better appreciate your full experience. There’s also the unmasking factor, as many of us didn’t get identified as autistic due to imitating “normal” well enough via the neurologically-taxing behavior of autistic masking; after learning about our neurodiversity, it’s common for autists to start unmasking, approaching the world in a way that is more natural for us. It’s very healthy, but it’s not without challenges. Personally, it’s something I’ve had to find balance on because I want to be my whole self and I think it’s suppressive that society has such a rigid idea of normality, but my naivety is real and people’s dickishness can get to me more than is worth my mental energy — as a result, I’ve become far more particular about who I allow in my life, they need to be able to hang with my whole self. If I have to feel like I’m playacting when I try to get shit done, just being able to relax and be myself with the people I care about is a requirement. Quality over quantity.
- YOU MIGHT BE OTHERWISE NEURODIVERGENT TOO: Autism very often comes with a side of ADHD or OCD, something I did read early on and thought to myself, “I’m pretty obviously ADHD,” but being autistic seemed like such a bigger deal and such a similar thing that I didn’t do anything about it for a year. A year in which I spent money in unwise ways while also not reopening my SSDI case in time to not have to totally start over — these are issues (impulsivity, lack of focus) that going on ADHD meds has really helped with, and I wish that I’d let them help sooner. (It’s just my observation, but it seems like a lot of AuDHD people get diagnosed late/mask well — please comment if you’ve got a thought on the matter…)
- THE CLARITY WILL LARGELY BE YOURS: It won’t make people you’ve struggled with suddenly understand you, some people will never be interested in understanding, and others just aren’t your flavor. Manage expectations about how this will change existing social dynamics. Similarly, when trying to get someone to understand why you’re struggling with something or need an accommodation/help, I’ve found that it’s more helpful to explain the specific issue (e.g. severe sensory issues) rather than saying “I’m autistic” as they almost definitely won’t understand how that relates to the matter at hand.
- DON’T TELL PEOPLE THEY MIGHT BE TOO: Once you get the brain clarity, you might recognize traits in people you know and find yourself wondering if they are autistic too. And since you wish that you’d found out sooner, it can seem helpful to give them a head’s up…but people don’t know what to do with that info and will probably be taken aback. Plus their brains are their brains, they’re the ones who know what it’s like in their heads. It could be true, they could be, we do tend to gravitate to one another — but if they have questions, they’ll ask you.
- IF POSSIBLE, INVESTING IN STUFF CAN HELP: I spent some time resisting items I now consider crucial, like earplugs, tinted glasses lenses, polarized sunglasses for fluorescent and outdoor light, a hat, noise-canceling headphones, and stimmy putty. I feel like I “look autistic” with all that, especially since carrying so much stuff also requires wearing a backpack (childhood teasing can have long-lasting effects), but so the fuck what. It’s a hell of a lot more flattering than having a meltdown due to sensory overwhelm! It also may be wise to consider getting a therapy or emotional support pet, I adopted my dog, Foxy Queen, about six months into my au revelations and she’s been an absolute lifesaver.
- EXPRESS YOURSELF: Unmasking can also be fun. After going far too much of your life trying to pretend to be “normal” when you don’t even really understand what that word is supposed to mean — it’s utter nonsense to me, you? — it’s natural to start exploring yourself in a more authentic way. Play with your style, your interactional style, your appearance, your surroundings, etc. It’s time to figure out what truly works for you, what really feels like you, and not just what people expect or want.
As a long-diagnosed autist cautiously put it early on in my revelations, when I was all elation, “You’ve got a journey ahead of you alright, but it’s worth it and you’ll be okay.” Integrating new information is always a process, especially when it’s something so closely tied to identity. I hope you’re someone who’s got an understanding support system, and that you’re not struggling with the stuff I talked about as much as I did. Either way, you’re doing it right.
Got anything to add? Please feel free to share your wisdom below. ❤
