The View from a Drawbridge

I’ve been a bit short-tempered of late. Cranky. Irritated. Frustrated. Of course I’ve had a basic idea of why this is, the broad strokes of it, but the very crux of the matter, the tiny, powerful seed that has germinated this extremely pissed off plant that seems to be wrapping its thorny tendrils around my very soul, has eluded me.

And then I had one of those instant epiphanies. Do you ever have them? The ones that hit you like a cast iron frying pan, just as you’re waking up to start your day?

I hate instant epiphanies. Yeah, they’re enlightening. But they tend to throw me off track. And at my special little spot on the autism spectrum, I do not cope well with being thrown off track. Not at all. Why can’t I have a nice, gradual epiphany that comes over me like a warm, slow, peachy golden sunset after a blissful day?

Anyway here are the pre-epiphany broad strokes. I have been misunderstood my entire life. Because of this, I have spent my whole life struggling to make myself understood, with very little success. It has only been in the past 4 of my 61 years that I’ve come to understand that I’m on the autism spectrum, so the bulk of the misunderstandings stem from that, or from my trauma reactions from all the abuse I’ve received over the years because of that.

And I’m sick and tired of it. I’m tired of defending myself. I’m tired of explaining myself. I’m tired of trying to be someone I’m not. I’m tired of apologizing for who I am. I’m tired of doing all those things in a desperate attempt to get the approval and/or affection that I’m clearly never going to get. Not only has that ship sailed, but it never pulled up to my dock in the first place.

Now imagine. Those are just the broad strokes. So buckle up for the epiphany, because here it comes.

Why the hell does all the responsibility for these misunderstandings rest solely on my shoulders? Why am I the one who has to suffer the consequences for being considered different and therefore ostracized? And just like that, I seem to have arrived independently at a theory that was germinated in 2012 called the Double Empathy Problem that I’ll have to learn a lot more about before I blog about it in detail.

If there is a misunderstanding between us, why shouldn’t you, too, wonder why that is, and be equally motivated to get to the bottom of it? I get it. Those of us on the spectrum only constitute about 4 percent of society (theoretically) so it’s much easier for you to just write people like me off and move on to someone who is “less work”.

But it’s also cruel. I’m a human being who gets shit-canned by society multiple times a day, simply because society doesn’t have the patience for me. It’s the equivalent of pushing someone in a wheelchair down a flight of stairs to get them out of the way, but it doesn’t seem so awful to the pushers, because my disability is invisible, so they can pretend it isn’t there, and that I’m just weird and should be avoided.

I would argue, actually, that for many of us, autism isn’t even a disability. It’s just that society hasn’t broadened its horizons enough to find us acceptable yet, and I suspect they won’t in my lifetime. I don’t have the right body language, interests, social skills, or sensory tolerances to be considered a citizen of the land of “normal” even though I had no part in determining its boundaries. So why am I being punished for falling outside a line that I didn’t draw in the first place?

I am judged every second of every day. I shouldn’t be so sensitive. I shouldn’t get overwhelmed so easily. I should be able to handle things better. I should be more positive. I should have more energy. I should be more optimistic. I shouldn’t think that way or this way. I shouldn’t draw that conclusion. Why can’t you just let things go? Look at me when I’m talking to you. Change! Change! Change! I don’t care what you do, just don’t be you or we’re through! Do you know what your problem is?

God, no. Please enlighten me. I haven’t been told since lunchtime.

So the epiphany, if boiled down to its basic elements, is this: I am not responsible for the shit you insist on piling on my shoulders just because I’m different. I won’t carry it, and I won’t suffer its consequences. If you don’t like it, then kindly fuck off. And nope. No asterisks. If you don’t like my language, stop reading my damned blog when you find me in a foul, uncompromising mood.

Having said that, though, when I have the energy, and when I’m in the mood, I will attempt to share my experiences with my fellow travelers, or with those who think they may be fellow travelers. I’ll do this so that they know that they’re not alone. Because I would have loved to have had someone to make me feel less alone before my diagnosis.

And I will make some effort to educate the rare neurotypical person who is genuinely interested in learning more about people on the autism spectrum, because frankly, the stereotypes that are floating around out there are so insanely inaccurate as to be destructive. And it’s those of us on the spectrum who bear the brunt of that destruction. I’m grateful, though, that more and more of us are speaking up. Maybe someday we’ll make enough noise to penetrate the neurotypical din enough to get their attention. (I’m not holding my breath, though.)

The first thing you should know (and if you’ve done any reading on the subject at all you’ve heard this time and time again) is this: If you’ve met one autistic person, you’ve met one autistic person. In other words, no two of us are alike. And it’s not like some are just “more autistic” than others, as if we all have the same exact symptoms, and some sort of autistic volume knob is turned up or down. That would be an autistic continuum. Read up on the difference between continuums and spectrums while you’re enlightening yourself. It’ll help.

So, for example, Johanna Nilsson, the writer below, who has graciously allowed me to share her insights, does not seem nearly as angry as I am. But what she wrote resonated with so many people on one of the Autistic Facebook groups I participate in that I felt compelled to share it with you. I’m also going to include the image she used. It’s not of her. It’s just something she pulled off the internet that resonated with her, and I happen to like it, too.

She expressed her autism experience much better than I ever could, and I could relate to every single thing she said, except 1) I don’t eat the same food every day, but if I’m only given food choices that I’ve never experienced before, it gives me huge anxiety, and if I’m expecting something to have a certain taste or texture or temperature and it doesn’t, I don’t handle it well. 2) I don’t turn shirts inside out, but I have to cut the labels out or I lose my mind. And 3) I don’t hurt myself, but I do have epic meltdowns.

So without further ado, I present to you, with infinite gratitude:

Johanna Nilsson

(Diagnosed a few months ago, at 52.)

I do not obey the world.

I have too many senses.

I speak too much truth.

I believe too much in words.

I cannot tell white lies; I have tried but felt strangely ashamed.

I get stuck in details and cannot get loose.

I can hear a pin drop at the neighbor’s.

I want to eat the same food every day.

I turn shirts inside out because seams and care labels feel like razor blades.

I am clumsy but have excellent fine motor skills.

I often get lost but always find my way home in the end.

I am a control freak who often does things I am afraid to.

I am impulsive but hate being spontaneous, and I dislike surprises.

I cannot handle sudden changes; I get scared and angry and hurt myself to escape the anxiety.

I take jokes very seriously and have been told that I am funny because I am so straightforward.

I become obsessed with things; sometimes it takes me to the abyss, sometimes to high heights.

I can write thick novels but struggle to read between the lines.

I want people but fear them and can only handle them in small portions.

I think that I say no, but others interpret it as yes, and vice versa.

I get exhausted by small talk, but ask me about the meaning of life and I can talk for hours.

I can be extroverted for a short while, but then I have to hide for a considerably longer time.

I leave first from the parties I said yes to in the hope that I won’t immediately start longing to go home to my books.

I have such strong emotions that I sometimes get overwhelmed.

I can be flooded with joy when I see a cat or a small child or an elderly couple walking hand in hand.

I can smell a flower and feel a sense of connection with the universe.

I feel calm in nature because it understands me better than all the psychologists in the world.

I have received so many diagnoses and gone through so many therapies and taken so many medications and yes, I am so tired.

I don’t understand myself, even though somewhere I do. I am confused and I have complete control.

I am middle-aged but feel like a child stumbling through a chaotic world where the most frightening thing is everyone else.