(no subject)
People seem to oversimplify autism. Or, perhaps, they simply oversimplify its effect on those who are, for lack of a better term, "afflicted" with it. Perhaps it's my fault for trying to hard to pass, for trying so hard to act "neurotypical", who knows.
I've heard people use the analogy that living with autism is like living in a foreign country your entire life without ever managing to learn the language. In some ways that's accurate. It certainly describes the social skills aspect quite adequately. You see, nonverbal social cues (facial expressions, body gestures, etc.) are complex enough that they are almost a language in and of themselves. Two typically developing people with good rapport can hold an entire conversation with nothing more than eye glances, gestures, and facial expressions. But for the autistic, those nonverbal cues are a blank slate. Social cues, for the autistic, are about as clear and meaningful as written language would be to a Neanderthal. Even when one learns to adapt, learns a fragment of this complex language (as I have striven so hard to do), interpretation of nonverbal language remains largely guesswork and, therefore, quite prone to errors.
But there is another aspect of autism, or perhaps I should say MY autism, that is even more frustrating. And perhaps it's not really the autism, perhaps it's a product of the verbal and psychological abuse I suffered as a kid that left me feeling chronically inferior to others. Whatever the cause, it seems that no matter how old I get, no matter how good I get at masking my symptoms, no matter how well I manage to function in the "outside" world, I always find myself looking out through the eyes of a child. And I'm not sure I mean that in a good way. What I mean is that, no matter how old I get and no matter how much of an age difference there is (or isn't) between me and those with whom I associate, I always end up feeling as if they are the adults, and I am not. I can honestly say that the only person with whom I feel I am a true equal (socially and in all other ways) is my husband. In fact, I was marveling just recently at the fact that my mentor in the SCA, a woman I have grown to greatly love and respect, is only one year older than me. Somehow I had it pegged differently. Not because she LOOKS older, because she doesn't. But because her demeanor, her bearing, her confidence with herself and how she interacts with the world is SO FAR above what feel, or can even come close to faking.
My body doesn't always do just what I want it to do. It seems, no matter how hard I try, that I am unable to get my physical/emotional self and my intellectual self on the same plane. In the past, I have reconciled this, and the social cues issue, but confining the majority of my relationships to online forums. Particularly a forum on Proboards for mothers of autistic children. I was one of the original members of that board and it seemed to be the ideal place for someone like me to find friendship, rapport, and understanding. We coexisted for six years in almost perfect peace and harmony. I was able to articulate my thoughts in writing and show them who, in my mind, I really am instead of having them see the mess that is my physical self and then have to look past all that to see the "real" me. It seemed to be the ideal solution to a very frustrating aspect of my life. And it was very fulfilling, in its own way. But then I made the mistake of trying to meet them in person. I saw parts of them that I wasn't quite sure I liked, parts that weren't apparent online. And they had the misfortune of seeing the whole me, the autistic me, and having to reconcile in their minds the fact that someone they considered "recovered" and looked up to STILL actually appeared autistic. I think, to some degree, that it was more than they could handle because a short time later (and I think I have written of this before) I asked for help and support regarding an incident with my son that required restraining him (before you freak out, I am trained in restraint procedures and really DO know what I am doing), and things escalated to the point where many of them blocked me and I was forced to unfriend the rest and leave the forum because the reminder was just too painful. But, looking back, I am not sure what could have been done differently. Because the truth is that I AM noticeably autistic and, to make things worse, I am also human and make mistakes. I do my best, but I will always have to deal with the fact that my physical and emotional selves are far disparate from my intellectual self and I will always have to deal with the fact that people have trouble making sense of the entire picture.
I've been having some problems (at least in my mind) with another friend because of just these kinds of issues. Because I just can NOT manage to appear NT enough to make some people comfortable. We were at a gathering at her house. I could tell she was upset and uncomfortable because she was trying to stay away from everyone. Because of how acutely I feel such things, seeing her upset made me upset and very uncomfortable. Upset to the point where I felt a panic attack coming on and I just wanted to get out of there. I opted instead to talk to her about it, to try and ascertain whether we were really, as I was feeling, in her way ... or not. She misunderstood my distress at HER distress as being selfishness and accused me of causing drama. She did reassure me that she wanted us there even though she wanted to be alone, but that accusation hurt. A LOT. And it created a rift in our relationship that I still feel today, though I am unsure whether or not she even remembers the incident. Because of that one misunderstanding, which I have not been able to find the words or the courage to try and rectify, I find myself shrinking and cowering every time she is near to make sure that I don't get in her way again, that I don't upset her again. And it's made relations (at least for me) with our entire group of friends very tense because she is almost always there and the reminder of that accusation, that misunderstanding, is always there.
This brings me to another frustration with the popular "knowledge" about autism and autistics. It has been said for years that we lack empathy, that we lack the ability to truly see and understand how others are feeling. There are times, particularly when a person is not well known or when a person has a tendency to hold their emotions inside, that such can seem true. It is very difficult for me to ascertain the specifics of a person's emotions if that person is one whom I have just met or with whom I have very limited dealings. I can tell when a person is feeling negative emotions, but knowing whether those negative emotions are anger, annoyance, sorrow, frustration, illness, or simple discomfort ... that's quite a different matter. For people with whom I am intimately involved, however, the truth is often very different. The truth is that, for these people, I don't just SEE what they are feeling. I actually FEEL it myself. I feel their distress, their heartache, their anger or tension ... very acutely sometimes. Acutely enough that it is often difficult for me to tell if I am feeling someone else's emotions or my own. And it gets overwhelming, overwhelming to the point where I am unable to cope and either shut down completely or start crying and appearing to be distressed myself. Which I am ... but at such times I am invariably accused of being selfish, or insensitive to how the other person is feeling, or of trying to draw attention away from that person and to myself when really the distress is a manifestation of just how acutely I DO understand how they are feeling. I choose to tell people that I am empathic. But how do you truly explain such a thing to someone who has never lived it? It's about as easy as explaining what it feels like to be autistic. Or, perhaps, what if feels like to be quadriplegic, though such a thing can be simulated to a certain degree.
I still need to figure out what to do about the situation with my friend. Or if, given how long ago this happened, the situation should be broached at all. I don't want to cause an more problems or make her any more uncomfortable, she has plenty on her plate right now and I have been very worried about her though, again, I haven't the foggiest notion how to demonstrate my concern without annoying her or sounding patronizing.. I certainly don't blame her for any of this, and don't want her to feel that she is being put on the spot, which is why I didn't mention any names or other specifics. But the occurrence has been bothering me and it occurred to me that this really is a perfect illustration of some of the issues I live with every day. If, that is, I have been even remotely clear in writing about it. I hope I have.