Exhaustion and the Burden of Being on the Spectrum

Posted by mouthyb | Posted in | Posted on 3:35 PM


It's hard for me to explain to people how tiring everyday life is. Whenever I start talking about it, people often want to know if I'm depressed, or assume I'm suicidal or some reaction to a temporary event in my life.

I suppose I should be flattered that they think I'm normal enough for all these things to pass. When I talk about the exhausting penalty on social interactions, at least one person will make the mistake of saying that they've seen me behave normally in a social interaction, and that this is proof that the penalty doesn't exist. I always want to tell them that I'm very good at hiding costs from people.

Of course, they typically aren't in a position to see that I need to take 24 hours to recover afterward of relative silence (as much as I can get) or withdrawal to a video game or my computer for hours afterward because I am worn down to the bone from playing chess with the arbitrariness that is other people.

I've had it suggested, despite what my therapist says are obviously weird behaviors, that I can't be on the spectrum because I do notice social events--sure, I'll notice changes on a face if I'm concentrating (and I try to stay concentrating because it's so hard to remember all the rules, otherwise.) I'll even notice body cues if I'm concentrating.

But the process is painstaking. I carefully, methodically observe, generalize, run trials and remind myself to adopt behaviors. There are delays when I'm speaking with you, unless I have a script.

I like to drink if I have to be social for an extended period. If I drink, there are excuses for delays, and drunk people are more patient (mostly.)

I spend some time when I'm feeling especially worn down, or hopeless that I'll be quite able to negotiate the world well, looking up examples of other women on the spectrum. Today's reading comes from the UK.

I have a double handful of diagnosis from my childhood. The only reason I know I'm on any spectrum is because of the recent popularization of autistic diagnosis for women. The inability to make small talk (I still suck at it, even with the script--it seems like such a waste of time) well and the effort involved in communication was diagnosed alternately as some sort of disorganization of thought or chronic shyness. For lay people, schizophrenia and anxiety are the associated diagnoses; unfortunately for the psychologist with the former diagnosis, I don't have delusions.

My interests and obsessions are usually attributed to the same shyness, as if they are compensation. Plus, my most common obsession (in my case, most often for what people do and trying to puzzle it out) is simply seen as shyness, again, or some shade of OCD.

My flatness of affect has been seen alternately as shyness, rudeness, the suppression of my emotions (I have them; usually it's some species of anger, frustration or annoyance and there's no point in airing that all the time), the refusal to connect with others or some sort of perverse wish to antagonize others.

As far as withdrawing to fiction.... the only way I managed childhood at all was through retreating into books so thoroughly that even when someone was slapping me, I still took awhile to come back to this world. I still tell myself stories silently all day long, while I do other things. I try not to be disappointed that nothing ever turns out like my stories.

It's nice to see that it is as I suspect and I'm not intentionally being difficult when I don't react correctly. People tend to assume I am (and I've been beaten rather extensively for it), and it's a relief to see that I'm not fooling myself--other people have the same problem, too.

It makes me feel less alone.

The Bridge to Normal

Posted by mouthyb | Posted in | Posted on 12:40 PM


So I finally broke down and started therapy. By myself, I appear to be unable to quite bridge the gap between myself and people I'd like to be able to talk to.

My therapist believes I am on the autistic spectrum--no surprise there. My affect is flat, even when I don't want it to be. Even when I am having strong emotions, I'm flat. Even when I really like something, my face is flat. It's hard for me to show any emotion unless I'm feeling overwhelmed, and I'm in the company of people I trust.

The last session we had, she started to talk about little behaviors that people interpret in a negative light. I have a little problem; I can't seem to quite be normal, or even to pass for normal. The only other person I've met with these behaviors is similarly obsessed with appearing normal. He's a sociopath (I think), and though no one appears to think I am, we both construct a outer self with which to try and blend in.

I went to the WIS 2 conference last month. After spending the first session packed into the single conference room with a few hundred people, it was all I could do not to run away. I can't quite orient myself when there's too many people around; I constantly orient myself against my friends or the people nearest me, checking that my reactions are within the range they're expressing, that the things I say are like theirs and that I'm making sense to them. When there are hundreds of people there and I don't know anyone, I don't have anyone to check myself against. It becomes very difficult to make sense of my behavior (or at least, to understand how they're making sense of it--since the way I make sense doesn't make sense to others, it feels very dangerous when I don't have an index to compare myself to.)

When I start feeling overwhelmed, the sound of the crowd and speaker become like listening to the surf. All the regular noise of the crowd drops away and becomes a wall of noise. My response is typically to retreat.

Since I wanted to listen to those sessions, I compromised and sat out in the hall, with the vendor booths. That way, if I got overwhelmed I could leave without disrupting the session and insulting the speaker.

I suppose this is weird. My therapist told me this sort of behavior is considered abnormal, and will cause me to be judged negatively by my peers in an academic environment. After all, they aren't going to ask me why I'm doing what I'm doing.

I also talk in my own language. I don't even seem to realize it. The therapist says any deviation from normal allows people room to judge, and that they will tend to do so in a negative light.

This, I'm afraid, is a bridge I don't even know how to cross. I've been baffled by what does not make sense to others for some time. What seems to me to be a logical compromise appears to others to be weird, even deliberately deviant. I've seen people react to these compromises with anger, as if I had somehow personally insulted them. And perhaps I did, somehow.

I don't suppose it matters, but that fills me with despair; to cause insult unwittingly, simply by the virtue of actions designed to reduce my distress and reduce the potential for another kind of insult.

My therapist says I have too many rules. She's right. I have lots of rules in my head that govern my behavior--I don't know what else to do but to observe, try to generalize a rule and obey it. I try my best to compensate for rules that make no sense to me, actions that make no sense. I remind myself that it is I who is deviant, that my reasoning, despite seeming sound to me, is not sound for society.

I told her on the first day; as far as I'm concerned, people are aliens. Whatever it is that allows people to effortlessly blend, I don't have it without mind-bending amounts of effort.

She thinks this makes me lonely. It does. But that is a familiar sort of emotion.