by: Sarah Rentrop, SWI
Picture me sitting at my computer with a racing heart, sweating hands, trying to slow my breathing, and all that jazz as I hit “Submit” to make this post accessible for anyone on the internet—because that’s what’s happening. This is a big deal for me.
Normally, if I know you well enough and if it feels organic or relevant, I would probably tell you that I’m autistic—but like this??? Unfortunately, reader, we haven’t gotten the chance to know each other, so I don’t have those warm and fuzzy feelings of safety which can usually tell me I’m free to share that personal fact with you. It also feels like quite a “big deal” to be autistic, given all the stigma, the discrimination, the misunderstandings, and oftentimes the general lack of understandings when someone is this way.
So… why am I sharing this?
Well, I’m (knowingly) taking a risk, to be sure. I’m also doing something the authors of the 2022 book Uniquely Human call “self-advocacy”. In Uniquely Human, Dr. Barry M. Prizant and Tom Fields-Meyer, also simply and meaningfully described autism as “a different way of being human”, not an illness; that’s the perspective I hope we all come to see, and I want to help along the way. To do that, I need to start by “throwing my hat in the ring” because I think more experiences need to be heard from the community of people like me—of late-diagnosed, high-masking, low-support-needs autistics (especially women). As you’ll soon learn, I’m really new to this community, but I’m very ready to do my part in dismantling stigma, unknowns, misconceptions—all of it.
Now, why do I think I’m capable to do some dismantling? Well, I think I’m a pretty good candidate, and I’ll explain why. See, if you just met me and/or if you didn’t know what signs to look for, you might never know I’m autistic.
Hiding the “Weird”: The Cost of Overcompensation
It seemed like I’d gotten decent at compensating for (essentially concealing) the way my brain works–until about two years ago, and ohhhhhhhh man, have I learned a lot since. (Of course, that’s a whole story too—we’ll get there.) Some people don’t know an autistic person can “look like” someone like me; that is, some people are only familiar with the concept of an autistic person presenting with a stereotyped set of behaviors and vocalizations and not meeting your eyes when talking with you, etc., which is why I feel it’s important for me to be transparent about the person I am. I think that if people know about a behavior called “masking” (and the mental gymnastics and complex experiences that go with it), we’ll be on our way in our journey of greater understanding. In Uniquely Human, Dr. B. Prizant and Tom Fields-Meyer describe masking as “when people on the autism spectrum make efforts to hide or camouflage their autistic traits for fear of being ostracized or discriminated against”. Masking can be so uncomfortable that it gets painful on cognitive, emotional, and even physical levels; also, not all autistics even have the ability to mask, which further excludes them from participating in places and social settings that are (though possibly needn’t be) abrasive to their neurologic makeup.
Knowing that people must do this just to walk in society, my hope is that knowledge stirs in you the same inspiration that it does in me: the idea that surely, we must be able to make the world a more fair place for everyone to exist as themselves. From there, I see more dismantling becoming possible—first, we’ll take apart misinformed ideas, unfair prejudices, and resulting acts of discrimination, and then we’ll stand a chance of rebuilding mindsets, social structures, policies, accommodative programs… I could go on.
The Journey Towards My Most Authentic Self
Because of my long history of masking, I’ve sort of walked with a foot in two worlds—those of the neurotypical and the neurodivergent. From the time I figured out I was pretty different (like different enough to get some undesirable attention), early in childhood, I started practicing hiding some differences behind a mask—though I was completely unaware I was doing so. I just thought social interactions were always supposed to be performances, so I had to learn how to “act”. Until quite recently, my true autistic self was continually coerced into stealth mode, safely tucked away (although I later learned the hard way this was not safe for my nervous system) until I could be with my people with whom I knew I could be “weird”. (Note: I don’t like having used the word “weird” there, and I want to be clear that I do not think of other autistics as “weird”. I wanted to include it only because it always was and still sometimes appears to be part of my self-concept—and I’m working on that. Also, this seems like a great time to mention an awesome site I recently found: https://autisticnotweird.com/ )
So, How Am I Doing?
It has been two years since I learned I’m autistic, and I shared that I’ve learned so much since then. Well, here’s just a handful of really cool things: I’ve enjoyed significant gains in self-awareness, self-compassion, interoception (sensing what’s going on in my body), and embracing my strengths. My favorite strengths I’ve discovered have been some innate neurological capacities of autistic brain “wiring” and also my own unique attributes.
My lifelong fears about being awkward and unacceptable are continually diminishing, and what has been kicking them out is the expansion of my self-assuredness that it is okay for me to be myself in the world and my belief that the world actually needs more empowered autistic beings. With greater compassion for myself, I can continue working on releasing the pressure I always forced on myself to do, perform, and be more than I was ever realistically, neurologically, and autistically capable to do.
I hope that my desire to end this piece with a tone of optimism does not downplay the lifelong struggles. (Like I said, I want to bring those into the light in another piece very soon.) I’ve found that “light at the end of the tunnel” success stories have sometimes left me as a reader with a sense of relief that “everything’s okay now”, which I think can bypass reflections on the true suffering shared earlier in the writing. You may not feel the same, and I can surely understand that. I know that we need to be able to relish in that place of relieved optimism and peace. I want you to know that it has taken countless hours of therapy, research, and work for me to reach this point of personal satisfaction on my journey—I have gratitude to a multitude of skillful, wonderful people—and the work goes on.