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.

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