Human beings have a hard time taking things seriously if those things can’t be seen with the naked eye. At least that’s been my experience. Mental health issues? You’ll be fine, until such time as you strip naked and walk down the middle of the interstate, or gun down some unsuspecting strangers. COVID? Invisible, so no need for masks. Global warming? Nah. It still snows.
Since my recent Autism Spectrum Disorder diagnosis, the thing I’ve been struggling with the most is the sheer invisibility of this condition. If you saw me walking down the street, you’d assume I’m neurotypical 99 percent of the time. You might think I was a little odd because I don’t always make eye contact, and I often have a blank expression.
You’d probably find me to be nitpicky about things that you couldn’t care less about if you take the time to get to know me. You might think I overreact sometimes. You might accuse me of being anti-social and rather rigid in my beliefs. But I doubt you’d look at me and think, “There’s someone with a neurological difference who needs some support or the occasional special accommodation.”
Because of this, my needs are shunted to the side, and on the rare occasion that I do “act all autistic” it shocks or irritates or scares or annoys those around me. Autism might be “all in my head”, but that doesn’t mean I’m making it up. I certainly can’t turn it on or off when it suits me.
Even the people closest to me seem to be struggling with this concept. They can read book after book or article after article, or watch video after video, and it will seem like they understand, but then I’ll have an autistic meltdown, and they’ll instantly revert right back to assuming I’m being manipulative and childish, and that I’m throwing a tantrum. That reaction then increases my frustration and makes the situation 1000 times worse. But in fairness, it’s a lot to ask of anyone that they instantly shift their perspectives about me. There’s bound to be an adjustment period.
Insisting that you’re not being manipulative or childish is a fruitless as saying “I am not a crook.” Once someone has that image of you, it’s all but impossible to get them to see you differently. It’s really hard for me to imagine that someone can hold such a low opinion of me and yet love me at the same time.
I struggle to love people that I don’t respect, so I can’t comprehend how someone else can do it. Do I really want the love of someone who thinks so little of me? Not really. Maybe that’s an autism thing, too. But don’t most people want to be loved just the way they are?
Would I have an easier time of it if I were in a wheelchair? Definitely not. But at least some people might cut me a little freakin’ slack every once in a while. At least I hope so, or I’d lose all faith in humanity.
Why is it so hard for people to believe that I’m not willfully misbehaving? Why do they find it so difficult to trust me when I say that I’m not being intentionally rude? I can guarantee you that I’m trying a whole hell of a lot harder than you think I am.
Another thing that those around me can’t really see is that my energy reserves are all but depleted. That means I no longer have the strength to try to convince people that my autism is real. After a lifetime of not being taken seriously, I lack the momentum to get up every day knowing I’ll be called upon to prove myself or explain myself. I am no longer up for this fight. Sadly, there’s no alternative.
I know I’ll never fit into the narrow view of what is normal in this culture, and it shouldn’t be a requirement. But to function in this society, I have to navigate around all the things that nobody else sees. I don’t get to take a vacation from autism. I live inside every awkward interaction. I am forced to accommodate the impatience and irritation that others seem to feel because I am not fitting inside their prescribed boxes.
When someone accepts me and allows me to be myself, it’s such a rare occasion that I feel the need to thank them for it. Do neurotypicals get to take that sort of treatment for granted? I have no idea.
All I know is that I just want to be either accepted for the person that I am or left alone entirely. Take your pick. At the very least, don’t invalidate my disability simply because you can’t see it. When you do that, it feels like you’re invalidating me. Of course I’m tired. I have to resurrect myself from invalidation multiple times a day.
Believe me, I’d snap out of it if I could. I’ve been trying to do so for a lifetime. And I’m really, really tired of being reminded that I’ve been spectacularly unsuccessful despite those efforts.