Autism is described as a spectrum for a reason. No two autistic people are alike. We all have different strengths, weaknesses, quirks, and tolerances. I suspect that’s why it’s so hard for neurotypicals to understand autism.
Some autistic people are nonverbal, but some aren’t. Some have very visible or very audible nervous habits, while some can hide them most of the time. Some can’t look anyone in the eyes, ever, and some can, sometimes. Some have extreme cognitive challenges and require 24-hour care.
Some of us are more high functioning than others. But I hate that term. It’s such a value judgment. It means some can pass more easily for “normal” than others. But I would argue that many people function in viable ways that might simply be foreign to a neurotypical person.
I can only speak for myself, of course, but where I sit on the spectrum can be an awkward place to be. You wouldn’t suspect I was autistic at first glance. Heck, I didn’t even think to seek a diagnosis until I was 57. I am, if anything, too verbal. You might even describe me as articulate. And my eye contact isn’t the best, but it’ll do. My nervous habits only come to the surface when I’m extremely stressed. The rest of the time, they’re only off the charts on the inside. I feel them even if they can’t be seen. Beneath my often blank expression, I’m sometimes screaming inside.
But at the risk of sounding all “poor me”, this means I struggle to be taken seriously, particularly when it comes to needing an accommodation. I can be accused of being overly dramatic when trying to describe exactly what’s going on with me. I’ve been asked why my autism is such a big deal. I’ve been told I don’t “look” autistic, whatever that means. It’s as if I have to justify my diagnosis before it’s considered valid.
The more you know me, the more you realize that I’m different, but most people can’t exactly put their finger on what the difference is. In essence, I’ve been “passing” my whole life without even realizing it, and I’ve become rather skilled at it. Yet I’ve been called weird more than once, believe me.
The constant need to either “prove” my autism or keep quiet about it and attempt to fly under the radar, is another layer of exhaustion for me. But I feel kind of guilty when I think like that, because I know that there are other places on the spectrum that present people with challenges I’ll never have. I’m verbal. I’ve managed to hold a full-time job. I can drive. I rarely display nervous ticks of any kind.
Much of my struggles are beneath the surface. If I talk about them, I sometimes get pushback from those who don’t have the luxury of discretion. It makes me feel guilty and selfish. It’s almost as if one must be inducted into the Autism Society to be considered legitimate. How dare I complain?
But then again, those who are more obviously autistic get more support and accommodation, whereas I’m out here twisting in the wind, alone. If I’ve survived this long without even knowing, why should I even bring it up? What’s the big deal? Am I autistic enough to have earned the right to grumble?
I guess we all have our own row to hoe. But I can say this: Imposter syndrome is real. And it only makes things worse for those of us who have it good, relatively speaking.
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The View from a Drawbridge 
Sometimes, my passing skills are so good people think I’m psychologically unstable when I’m overwhelmed and the mask slips. It confuses them because I seem so rational normally. If they only knew how much energy’s spent forcing a smile, biting my tongue, trying not to freak out when touched and making myself look them in the eyes. Years of pushing down my real reactions took a toll. I’ve reduced interactions, with people, to absolute necessities and l’m on edge the whole time. Even phone conversations leave me exhausted and sweating. I don’t explain that I’m on the spectrum because I’d rather be accepted without justifying my differences. It’s how I deal with others. Accept them as is. No labels needed to explain or excuse their differences. Normal is a subjective measurement anyhow. Take me as I am, flaws and scars, or leave me be… unmasked.
I have been masked for so many decades, without even knowing it, that only now am I learning how to unmask. The hardest part seems to be gauging who I can do this around, because there are so many people whom I thought would accept it who have proven otherwise. It;s a new level of stress.
https://www.youtube.com/watch?v=SF6rSTyGpWs This beautiful song with it’s poignant lyrics can apply to your current healing journey. You’re discovering that the you behind the mask has many unhealed wounds that the mask hid, not just from the world, but from yourself. You’re slowly letting go of that mask and realizing that fully accepting yourself means risking rejection, from some, as you are “remade, repaired, and reshaped”. It’s scary to endure those little deaths after decades of hiding behind the illusion of faux acceptance. Take comfort, as you embrace your authentic self, that no matter how much changes, you’ve always known your name and now there will be others who do also. Unmasking is stressful, but it’s end result is a freedom only you can give yourself. I’ve known your name all along. You haven’t been twisting in the wind alone. Some of us have been by your side, having recognized a kindred spirit, and are here to support you as you heal and grow. 🦋
Wow. That’s an amazing song. And thank you for some amazing advice. “The illusion of faux acceptance” is pretty profound. May I use it? In fact, can I use this entire comment? You are a guru, my friend.
Of course you can use my comments anytime. Feel free to correct any grammatical errors while you’re at it. 😊
Sympathy from here. I think that this very diversity means it’s time to discard the autism concept/label and come up with a bunch of better ones, because it has been stretched all out of any meaning any more, in several directions. People aren’t about to fit on a single spectrum. I wish more people understood this instead of jumping, or throwing others, on the latest bandwagon. If the diagnosis helped you, that’s great, but there are others who just find it another thing that doesn’t fit.
There are pros and cons to that concept. I have found it to be a great comfort to FINALLY feel like I’m not alone. Being part of the spectrum makes me feel like I am part of a culture for the first time in my life. But even there, the acceptance is kind of spotty. Still, it’s nice to feel like I’ve found my tribe. On the other hand, yes, breaking it out into groups would allow those tries to be a bit more concentrated and they’d perhaps be able to advocate for what they need. I don’t know what the reasoning was behind getting rid of the term asperger’s and now saying it’s just part of the autism spectrum, but there you have it. Further consolidation, for better or worse.
And if something doesn’t fit, one should not be forced to wear it. And that should be okay, too. You are alright by me, Angi.
https://www.youtube.com/watch?v=Tbes1mm2VgM one reason for dropping the Asperger’s term is addressed in this talk. Just ran across this yesterday.
Thanks Lyn!