I came up with this post yesterday, but was not feeling great so I couldn’t do the new-word-generation required to turn it into a blog post.
I’m working on a video that deals in part with what disabled children often think about what’s in their futures. While I’m not likely to include much of what I’m about to write in this video — it’s a bit tangential — some of the stuff I was coming up with for the video reminded me of it.
In The Me in the Mirror, Connie Panzarino talks about growing up with spinal muscular atrophy. She was told things in physical therapy like “You can move your legs, you just won’t.” She has a long memory — back into babyhood — and describes her life starting at a very young age. And, among other things, she became convinced that she could walk and just didn’t want to enough. She thought of herself as different from other physically disabled children she knew, because she believed that she, unlike them, had this secret that she really could walk and one day would once she decided to.
It’s important to note, about her and about what I’m about to describe about myself, that in a less ableist society, disabled people would not be likely to end up thinking this way, any more than most people (other than kids who’ve watched too much Superman, and adults who’ve read too much New Age garbage) think they could fly if they really tried. It’s not “only natural” to believe these things, it’s a product of growing up in a society that really doesn’t take people like you into account, in a big way. What I am about to describe is not pretty, is not desirable, and was not fair to the disabled people around me. But I was a kid, kids think things like that in societies like this one. I’m writing this — and a lot of other things — because no kid should have to grow up thinking what I did.
Anyway, I can remember the time period when my abilities started shifting around. When I say shifted around, I mean like someone came into my head and rearranged everything while I was asleep. I can’t remember if it was gradual or sudden. I don’t know how much of it was truly the loss of certain abilities, and how much was the loss of appearance of certain abilities that had been only tenuous and illusory to begin with. I do know I gained other abilities during that time period, that I’d never shown any remote talent in before. I also know I gained awareness of certain things I did, and could not do, at that time, awareness that I did not have before. And I know that some things really did vanish. Basically there was a giant shuffle taking place in my head, beyond the usual shuffling of puberty.
At some point, I convinced myself that unlike other people, who could not help being like me, I was different. I was better. (Told you this wasn’t very nice or fair to others.) I was only being like me because I was choosing to be an individual. Others like me were only being like me because they couldn’t help it. I tried to distance myself as far as possible, including from people who were in reality far more capable than I was at a lot of things. I, unlike them, could cease to do certain things, or start doing others, any time I wanted. I just… never seemed to “want” to.
This was backed up by, among other things, shutdown. I would experience a longing for shutdown when I was overloaded, and there it would come. This must mean that I controlled it and could will myself not to. Even though I couldn’t. It did not cross my mind that having an extreme longing for shutdown is kind of like an extreme longing for sleep: It’s a biological need expressing itself as a “want”, and if you manage to put it off for any length of time, biology will take over.
While this gave me a false sense of control, it also meant that I felt guilty a lot, and as if I was a horribly selfish person (in ways other than I was actually being selfish — such as by adopting this belief system, which is truly very self-absorbed). Who but a horribly selfish person would choose to flop on their back and wave their hands and objects in front of their face while other people around them “needed” them to be doing something different? Who but a horribly selfish person would delay an entire group of people by freezing in place while overloaded, and force everyone around them to try to figure out what was wrong? Who but a horribly selfish person would lose control of their body in all the myriad ways that I did all day every day, forcing other people to deal with the consequences?
Because I did. There were a number of things that were simply too painful to think about before I realized I didn’t actually cause them.
The time that being fed a combination of chocolate and espresso beans meant that I ran around wildly and then shut down in both movement and comprehension so far that I was sent to a neurologist in the aftermath.
The amount of time I spent staring at nothing, doing nothing.
The fact that school and language were both incomprehensible far more often than not.
The fact that I acted like, and felt like, I did not understand things, only to understand them far later (“must have understood all along”).
The fact that I spent most of my time either doing repetitive movements, not moving at all, absorbed in the sensory experience of various objects, or thinking about one topic and only one topic.
The fact that I spent a lot of the time not thinking in the usual sense of the word. (These days, I’d consider it thinking, but it’s not what people are taught thinking is.)
The fact that I couldn’t get my mouth to say much, if anything, that was in my head, and often couldn’t even get the thing to move at all.
The fact that I spent much of the time babbling nonsense unrelated to my thoughts when I could get anything out.
The fact that there was only a tiny amount of stimulation I could tolerate before everything went haywire.
The fact that I was in excruciating physical pain all the time and frequently reacted to it.
The fact that I did things like flop on the floor, run away screaming, make certain kinds of motions, and hide inside and under things, spin around in circles a lot, that nobody around me was doing.
All of these things and more troubled me greatly, not least because I thought I must be doing all of them on purpose, behind my own back, subconsciously, or something.
This, by the way, is why it’s a really good idea to discuss, and discuss often and accurately, being autistic, with your kids, even if you think they are too young to understand. They will come up with far worse explanations than anything you could possibly say to them.
Anyway, I believed that I could stop these things any time I wanted to. I believed this all the way into institutions (at least part of the time), despite the evidence that I could not. I decided that I must really want to be in them if I acted in the ways that got me put in them. I decided I was the most twisted, selfish, and bizarre person on the planet. Nobody knew this about me, I came up with it on my own, although plenty of people reinforced it along the way without knowing it. It was my worst secret and I dreaded the day that I would be capable of telling it and put on the spot. Everyone around me who acted just like me couldn’t help it, but, I was convinced, I could, and that made me both better and worse than them.
It became worse after a doctor harnessed my echolalia and echopraxia to get me to act certain ways that were actually out of conjunction with who I was. I said before that I don’t feel trapped in my body, meaning I don’t feel trapped simply by appearing disabled. By the time that guy got through with me, I definitely felt trapped, because what he had me doing was so far out of sync with anything I was thinking or experiencing, further than anything every had been. When, even in the face of all this, I acted from things like overload and incomprehension that were not going away, when I slammed my fists into my head over and over, when I didn’t understand what was going on, when I still couldn’t communicate, and yet this guy was considering me “much improved”, my mind twisted into more knots than it ever had been.
Nobody should have to believe that they are, consciously or subconsciously, causing themselves to be autistic. I happened to fall into the clutches of a psychotherapist who was a holdover from the old psychodynamic-approach days. This. Did. Not. Help. To put it mildly.
But this kind of bizarre rationalization can only happen in a world where it is made bad to be autistic. It’s not that the truth I wasn’t facing was such an awful truth, it was that this truth was made awful by the way autistic people are viewed and treated. By the fact that I was not being offered any true guidance or assistance that would have helped me. By the fact that there was no roadmap and the only roadmaps I had, told me I would be institutionalized the rest of my life and that this was the only fate possible for people like me (unless we could be miraculously cured).
There is no reason that people should have to believe things like this about themselves (both that some aspect of themselves is horrible, and that they themselves are the ones causing it). But it is disturbingly common that people do.
Ballastexistenz 
I have been meaning to write something somewhere along these lines. But I must say I was amazed to hear this coming from you, to read so much I empathised with that you had me in tears.
Before I read this, I put these feelings (and their echo in my subconscious today) down to the fact that I have fluctuating subjective symptoms (pain, fatigue, cognitive dysfunctione etc) and a condition shrouded in some mystery. But it was just the same; I was different, other people with my diagnostic label were really ill, but not me. I was in control “behind my back” as you put it, bringing this about somehow.
I even cited my ability to be articulate and coming across as smart in face-to-face spoken communication as the way in which I managed to manipulate doctors (with whom my experience has been generally very positive) into assuming an “organic” cause.
The worst thing is that recently I have enjoyed a significant improvement in my symptoms, particularly levels of pain and the amount of physical activity I am capable of. And I find myself congratulating myself; haven’t I done well? See, I’m being more positive, I must have hit on the right attitude. I was probably able to do this much all along, only before I didn’t want to – I thought I wanted to but I couldn’t have done, not really…
But it was just the same; I was different, other people with my diagnostic label were really ill, but not me. I was in control “behind my back” as you put it, bringing this about somehow.
…yeah. That sounds familiar, also.
And I don’t know if I should say this, because it was and still is regarded as a ‘dirty secret’ by us, but we also felt at times that we were superior to others because we had ‘voluntarily chosen to suffer,’ like all the saints who mortified themselves. And that it was a kind of revenge against the people who insisted we weren’t suffering when we really were, etc.
Wow…a lot of this is oddly familiar. You’ve said things here that I never even imagined anyone could put into words, if that makes any sense — it’s like reading through something very much like the mental “battles” I had with myself for years. Being told over and over again that I must be “trying to be strange” and that I must deliberately be trying to get out of doing certain things, etc., took its toll and I’m only just coming out of that frame of mind as of this past year.
Wow. Intense post.
I think it’s common for people to think that part or all of a disability isn’t quite real. To bring up a very small example, I can’t point my toes. There’s very solid medical evidence that I am, and will forever be physically incapable of this. Not a big deal. But I spent the ten years between my first elementary school gym class, and my last high school gym class convinced that I wasn’t trying hard enough, and was just being lazy.
This was because I got a lot of physical therapy in which it was made clear that I absolutely had to reach down and point my toes with my hands for five minutes every day, for unspecified reasons. I assumed it was to make them point the normal way. And being about as good at keeping a routine without adult supervision as the average kid, I would occasionaly forget. Which meant it was my fault for being lazy, and if I just worked harder, it would work. By the time I found out that the stretching was to keep my muscles from tightening up, and it only needed to be done every few days, I’d completed my public school gym requirements, rendering the ability to point my toes completely irrelevant.
I think part of it is that people have such weirdly absolute expecations of disability. It’s expected that someone in a wheelchair can’t stand or walk at all, someone with a white cane reading in braille can’t see your hand waving directly in front of their eyes, and someone who’s non-verbal can’t produce any intelligible speech, ever. And people who don’t fit neatly into the image are assumed to be faking. If someone has a temporary or limited ability to perform at a certain level (some unassisted walking, the ability to temporarily stave off shutdown, etc.) that becomes the standard of performance. No wonder it’s a common idea that trying hard enough will lead to normality.
If someone has a temporary or limited ability to perform at a certain level (some unassisted walking, the ability to temporarily stave off shutdown, etc.) that becomes the standard of performance. No wonder it’s a common idea that trying hard enough will lead to normality.
Yes, if you evince the ability even once, it means that all the rest of the time you were just putting on an act of not being able to do so.
Which seems to me like a ridiculous amount of trouble to go to just for ‘getting others to do things for you that you don’t want to do yourself.’ In fact, that idea is so ridiculous that I doubt anyone who holds it has ever thought much in depth about the amount of acting that would be involved in continually feigning overloads and shutdown, for instance, if you really had the ability to keep going.
But there’s the insidious “Big Lie” effect of other people constantly telling you what your “real” motives and capabilities are– you can come to believe that even the most absurd things about yourself must really somehow be true after all, because why would everyone keep saying and thinking it, if it weren’t?
In seventh grade I became convinced that I was having seizures on purpose to get out of class.
In fact, I even became so convinced that I once broke down in tears and “confessed” to my dad that I had really faked them, that I got taken in an ambulance needlessly (it wasn’t a life-threatening one; I have seizures very infrequently) and compromised the family’s ability to pay for things because of this, that I had lied to them.
Much of what you describe reminds me of my childhood and early adolescence, especialy pre-diagnosis. I started to believe the idea that if I couldn’t find the words to speak at a given occasion, that I simply wasn’t trying, because there were many other occasions when I would respond to people’s questions. I remember thinking that when I was in first grade and instead of participating in the group project stared at a wall all day, that I must be defiant. That when teachers talked to me and their words were jumbled and I couldn’t make sense of them, that was because I CHOSE not to understand them. Tuning them out, selective hearing, they called it.
I think this is another important function of autistic blogging, aside from political motives and educating people. It’s important for autistic people to be able to reflect on these things, particularly as society engenders many of these problems that arise, and it can be very difficult (especially growing up, with little context or exposure to these issues) to sort out what is prejudice and what are the “real defects we need to feel ashamed of”.
That’s one reason I enjoy reading blogs by autistic people. I can see something of myself in various people, aspects of myself I’m not used to identifying in other people around me. I may have various issues, both external and emotional (which overlap quite a lot, as emotions tend to be reactions to external things and these emotions influence our actions), but one thing markedly positive about this year as opposed to previous years is that there’s far less beating myself up (both figuratively and literally) about things that I can’t do, or that I have more trouble doing than some others. It’s also good to know that you’re not alone in your experiences, which is especially reassuring when your experiences are so far out of range of the experiences just about everybody you know has experienced.