As I read more and more about my autism (for new folks, I was recently diagnosed with Asperger’s, an Autism Spectrum Disorder or ASD), I am, for the first time in my life, seeing my life experiences clearly. All of my difficulties, particularly in social and emotional settings, are explained. But my emotional reaction to this, which the literature affirms is not subject to the same executive control as those with non-ASD brains, bubbles up and overwhelms me, and I keep having to stop, let those emotions run through and out, and then dive back in and keep going.
So many things. I won’t provide a list, but the overview is that where non-ASD, also referred to as neurotypical (a word I am reluctant to use, as it seems somewhat derogatory to me although I can’t figure out why), people have dials for focusing and managing attention and emotions, people with ASD only have an on/off switch. As in, you get it all, or you get nothing.
Our ability to understand which feedback coming in we should pay attention to, which we should habituate to, and which we should be sensitized to, is severely impaired, as is our ability to flip back and forth among these. Executive control over emotions and attention is all but nonexistent, although many of us have learned to mimic the signs of it, by hiding our emotional responses from observers, or adopting postures that give the appearance of paying attention to someone even when distractions have made it impossible to do so.
At least, that’s what I do. I can’t actually pay attention to you when there’s a television on in the background, but I will face you, maintain the right amount of eye contact, and occasionally nod and insert the proper verbal encouragement to keep the conversation going when I detect that the pitch of your voice has gone up and is followed by a gap of about a half a second or so. (In a restaurant, if there is a television, I will get to the table first so I can sit with my back to it.) Most people do not have to learn this behavior as adults. They were so young when they learned it that they don’t remember it, and certainly, never broke it down in the way I just did, into a series of steps I must consciously execute, although I have grown so skilled at it that it (hopefully) appears natural.
People used to make fun of me, or worse, call me rude, because they would be talking to me while the TV was on and I would get pulled away by the television and miss what they were saying. But now I know it wasn’t my fault.
People still find it odd that I take things literally when I’m not supposed to, and disparage me for it. I’ve tried to get better about it, because I thought it was a flaw I needed to remedy. But it wasn’t my fault.
People have pointed out that my monotone way of speaking about emotionally fraught situations is callous and off-putting. But since my only choices are no emotion, or far, far, too much emotion, that’s not my fault, either.
People, even my own therapist, have accused me of becoming overwrought at situations that do not merit this response, and that it is my fault for letting myself get spun up. I have spent years trying to fix that. But it’s not my fault that I’ve had so little success.
People have made fun of me when it comes to losing things, dropping things, not being catch things thrown at me, bumping into things. I have developed elaborate routines to try to fix this, particularly the first, in an effort to be more “mindful.” But it’s not my fault that I still have so much trouble.
People accuse me of ignoring them when they’re trying to get my attention, after having called my name or motioned to me, more than once, and failed to get a response. I thought this was because I was too self-centered, and have tried to maintain a better awareness of my surroundings. But it’s not my fault that it still happens.
Learning to drive a car remains the most difficult skill I ever had to master. Being aware of every single thing going on around me while driving at the same time is a task to which my mind is uniquely ill-suited. It took me three times as long to do it as it did most of my friends, who were on the road mere days after learning the basics in the parking lot. Granted, they learned on automatics, whereas I had to assimilate a clutch and a stick-shift. But even so, my progress was painfully slow.
I dreaded when my mom would come to pick me up from high school and I, already exhausted from a day of unproductive interactions with my peers who understood me not at all, would frequently dissolve into tears or throw a temper tantrum when I would see my mom sitting in the passenger seat. (Needless to say, this reaction rarely yielded the desired result. I usually wound up having to drive home anyway. Momma Ape never has been a pushover, and thank goodness, because who knows how much longer it would have taken otherwise?)
Now I know that all of the things that created that response, from the exhaustion, to the reluctance to have to perform what was a much more energy-draining exercise for me than it was for most, to the all-stops-pulled emotional reaction to these feelings, was not my fault. I wasn’t being hysterical or immature. I simply couldn’t help it.
So many things I berated myself for, time and again. So many times I vowed to become less self-centered, less emotional, more mindful, to pay better attention… if I’d been a neurotypical person, how much of my life would have been so completely different? How many more friends would I have? How many more fulfilling, life-long relationships? How much less abuse, intentional or otherwise, at the hands of my associates and peers would have occurred? As sensitive as I am to such things, as deep as my sense of personal responsibility runs, how much of a better (I know, I shouldn’t say better) person, employee, friend, daughter, sister, girlfriend, would I have been?
My whole life, I’ve run up against situation after situation where I didn’t behave the right way and I always, always thought it was my fault, that it was something wrong in me that I needed to fix. I couldn’t understand why was it that these types of things kept happening to me, and why I had to expend so much effort to do what seemed to come so naturally to other people.
But it wasn’t my fault. I won’t say all of it, but most of it was truly beyond my control. And it doesn’t mean I don’t have to learn how to be better. But years and years, practically an entire lifetime of self-flagellation over all of this, over something that I couldn’t help, has left me with a self-esteem that is tenaciously, cripplingly low. And I’ve been this way for so long that I despair of trying to lift myself up.
I’m angry at everyone who ever made me feel bad about myself, even my close friends, who stayed friends with me despite a veritable pattern of self-centered obtuseness; even my family, who loves me dearly in spite of my strangeness; even people who tried in different (and largely unsuccessful) ways to help me, I’m angry at all of them. Always, the implication was that I wasn’t applying myself, wasn’t trying hard enough, when I was trying, so, so very hard, and wasn’t successful, and couldn’t understand why, and was left with no answer that made sense, other than that I was a fundamentally flawed human being, unworthy of friendship, unworthy of love.
And when you think of yourself that way over and over again, year after year, decade after decade, how do you come back from that? I only discovered that it wasn’t my fault just in the past few weeks. A few weeks against thirty-some years of negative self-talk buttressed by negative feedback from those around me. No wonder I’m so upset. No wonder I’m so angry. I’m grieving.
I’m grieving for that poor little kid inside me, so misunderstood, even by me, who never had a chance, who sustained so much blame, so much bullying, who tried so hard to do the right thing and couldn’t understand why she kept failing. I’m grieving for me, now, adult me, for the ten-plus years spent painstakingly recording and memorizing social interactions, learning what empathy what was supposed to look like so I could properly express it, and continuing to run into situations where I came up short and was blamed for it, and berating myself for still being so selfish.
It’s ok. I keep telling her, keep telling myself, over and over, trying to soothe myself, another task for which my brain is far less capable than most people’s. You’re not bad. It wasn’t your fault. You don’t have to feel this way about yourself any more. But I feel as though I’ve been imprisoned all this time for a crime I didn’t commit, and suddenly the door has just sprung open. And I’m afraid to walk through it, to walk back out into the world; I’m afraid people will not believe me when I tell them I’m innocent, no matter how much literature and research about high-functioning autism I throw at them, no matter how many times I try to explain it (and I’m a really good explainer – too good, providing far more detail than most people care to imbibe). And I can’t do anything about that, and I have to get over my emotional response to it.
But it’s really, really hard. It’s huge and overwhelming, and I don’t know how to even come at it. And knowing that that is not my fault, either, doesn’t help at all.