“

But anyway, we have seen a few discussions going around lately about how non-autistic professionals tend to say autism is about impaired socialization, “theory of mind,” stereotyped repetitive behaviors, etc. While autistic people say that it’s about profound differences in cognition, perception, and communication. (And often the autistic people disagreeing with the professionals about this, are the ones who’ve been labeled as severely affected or low-functioning or thought by other people at some point in their life to be incapable of understanding what was going on around them. And no, these things are not mutually exclusive with having been labeled high-functioning, mildly affected, etc at some other point in a person’s life.)

And… one other thing we’ve noticed is this:

Autistic people who believe that autism is primarily a deficiency in social skills, “theory of mind,” etc, often tend to be more unhappy than autistic people who believe (as we do) that the most important aspects of it are profound differences in perception, cognition, and communication. To actually have a lower “quality of life,” when it comes to what they want versus what they have.

And this probably has a lot to do with the fact that they have been taught to believe that their entire life is going to consist of trying to strive after Almost Normal even though they will never quite get all the way there.

”

OMG I feel ripped to shreds. I feel like I have no skin at all. Fuck.

[If anyone from there reads this, this isn’t personal. I’m autistic, and if you stick me in a room with that number of people, even the most wonderful people will have this effect on me. And the overload meant I was unable to use the quiet area because my brain was too full to remember. Those of you that I remember were mostly great and I’m thankful to all of you. That can’t change this. After I am less overloaded I’ll be better able to remember the good stuff.]

Keep in mind also I spend all day every day in bed except for to go to painting if I’m up to it and medical appointments. I don’t even go to the store. Or down the street. I can’t remember the last time I did something like that. Now imagine going from that to an extremely crowded art opening.

Now I remember why I hate art openings and conferences and other crowded places.

(The worst I’ve ever seen was an AutCom conference at a hotel going on at the same time as three weddings, a bar mitzvah, and Elks club. And… we got in the lobby. Kathleen parked my wheelchair by the elevator. By the time she checked in, I was unable to control my body (no clue if it was frozen or stimming) and there was this weird continuous scraping sound coming out of my throat. We got upstairs and I immediately had to throw up. I’m just glad I could move again when we got to the room or it’d have been messy. Then I spent hours in bed watching the entire world turn into pixels. And that was just checkin!!! By the end of the conference I had what was either a really weird migraine or seizure or movement disorder or some sort of stroke-like thing: My body went limp on one side and rigid on the other, straight down the middle, head to foot. I couldn’t type for awhile at all and then only with someone actually dragging my arm off the table by grabbing on with both arms and using their body weight to help pull it back. Hell. On. Earth.)

Anyway what’s bothering me isn’t just the sensory stimulation. Although that would be enough. It’s the fact that there was a room crammed full of people. And people have kind of a presence to them. And that’s what I normally pick up on about them best in the first place. And so being in a room with so many people crammed into close quarters was like the people equivalent of staring at a bright lamp held right in front of my eyes. For hours.

And now… I feel like my body normally has a defense system against all the people-presences that can normally work. In normal situations. Which don’t include rooms full of people getting in my face and drinking and all the things people do at openings. I am so glad I don’t have much control of my body anymore, because if it were ten years ago I’d have has a violent meltdown. It’s hard to bolt out of a crowded room in a big-ass powerchair, but fortunately the reason I’m in the powerchair also generally prevents that kind of thing.

Only it’s worse now from the inside. When I had meltdowns there was an outlet. It was awful but there was a little bit of a pressure valve. These days? OMFG. I hit the point where in the past I’d have started screaming and flailing. And then it gets worse. And worse. And worse. And I start falling through nothingness. And then I hit the ground. And then I’m sliced to pieces. And then everything normally kept outside of me, flows in through the cracks. And then it just spirals into complete hell. I can’t even begin to describe how bad it gets now. And the whole time, I can’t do anything at all to let off the pressure. Even if I’m still responsive to people. Which isn’t always. And eventually everything is just gone.

It felt so much like an assault even though it technically wasn’t. Then add in the people who were actually invasive in any situation: People leaning in my face with their faces two inches from mine. And talking in slow sentences. And touching me. And touching my clothes. And talking and talking and I couldn’t hear them anyway so just nodding and saying thank you in sign language mostly and hoping I was making some sense. And then not being able to do that anymore. And they still kept coming. And GAH.

The air in there smelled like wine. So I stopped breathing through my nose. Works with shit even when my ass-blow-drying machine is heating it up. Works with cat piss. DOESN’T WORK WITH WINE. I could taste the wine. I hate all alcohol. I hate being around drunk people. So stick me in an enclosed room with alcohol and drunk people. I don’t actually know how many counted as drunk. Especially since with things like CP even a little alcohol can slur your speech. And I’ve never understood, behaviorally, the line between drunk and tipsy. But they were affected by alcohol and that’s enough to set off PTSD to some extent. And I hate the smell even without PTSD. Yes I’m whining about wine. :-P

And I understand that to someone without tendencies to overload this would have been wonderful. Even to some people with those tendencies maybe. I know someone whose dream is to have their art in a gallery and go to an opening. I kept reflecting upon how her dream is my nightmare. But she did always seem to have this weird trick I wish I could do — if people were paying her a lot of positive attention then overload lessened and she could bask. I can’t bask. I want to hide and then I feel like an asshole to all the people who are trying to be nice to me. I once jumped under a table when someone played my already-viral video in front of a large audience. (Then a bunch of autistic people jumped under with me and that was amazing of them. It made me feel less awful and took my mind off the fact that lots of people were watching me.)

But it’s never failed to seem weirdly ironic that I’ve known tons of people who would love to have opportunities for attention that I’ve had. Who have worked and worked for that specific goal. And I seem to get a ton more attention than I’ve ever wanted, as sort of a side-effect of trying to do other things. And then even when I’ve tried to use the attention I get to give other people attention, it backfires. Like when I brought CNN to that conference and they interviewed lots of people and then only showed me and then the conference people felt betrayed and I felt betrayed and fuck. My friends always bring up Harry Potter when I talk about this stuff.

So anyway in the case of art I need to supplement my income a bit. And that’s not why I do art and not the only reason I show my art. But it is the reason I sit through hellish events like openings. I can’t imagine wanting this. But the person I know had all the details planned out in her head — the wine and cheese and everything. And I didn’t even know what happened at openings until the first time my art wound up in a gallery. This time the people seemed much less like pretentious fucks than at my first one. I actually backed out of selling my art at the first one because I was too creeped out by the people who wanted to buy it.

Sorry for all the tangents. My brain is more all over the place than usual. Inside it feels like it’s doing what my eyes were doing at the gallery.

So anyway. The point in overload where I’m sliced to pieces after all the falling. That means that my normal “immune system” against people is shot to hell. So then I have no more barriers against all their feelings and stuff. And it feels like mine get mixed up in theirs. And it’s terrible until I’ve had long enough to rebuild my “immune system”. Because its like the presence of anyone is going to be excruciating until then. Like touching an exposed nerve.

It used to also be bad. Probably still sometimes is — like what happened to me after I watched a few hours of Temple Grandin lecturing (her emotions are so intensely pressurized they got through my defenses fast — I will never do that again). Anyway what happened to me at the AutCom/3 weddings/Bar Mitzvah/Elks Club thing was typical for such a situation. Eventually all the people and chaos and emotions and stuff came in through the cracks while I was physically much, much more energetic than I am capable of being today. I proceeded — while supposed to be getting ready to present — to get stuck in a frenetic movement loop.

It was a small room. One of those hotel small rooms they make out of bigger rooms by putting up those weird cushioned barriers. I think. I don’t remember. I just remember the part of the walls I was near were soft.

I know this because my body picked me up and started running as hard as it could, hitting a wall, turning around, and doing the same. Over and over again. Even though I had a migraine already. It didn’t feel like I was running. It felt like chaos had come into me from all the people and made me run. It was awful. Then I ended up lying on the floor while someone else read my presentation. And feeling really awful. (I once compared such moments to performing. What I meant is it felt like being on stage with everyone staring at me. Except worse. Because in that state I can’t control my body enough to hide from everyone. So I get to watch my body completely lose control in front of a huge amount of people. And it’s worse around presentations because of nerves and all the people so it’s just amplified. I used to think presenting didn’t stress me out. I later realized I just didn’t know what stressed out meant so didn’t understand why my body always went haywire at those times.)

Anyway so yeah. My people defenses have been shredded. That means really bad things. Really bad things. Until I recover. I feel like I haven’t got any skin. This is probably the worst thing about overload. I’d rather have lost all sensory input and all language and all conscious thought and all motor control AT ONCE than this.

Oh and that thing about autistic people having no empathy? I’ve got too much. Always have. This is the result. I pick up everything until I can’t even tell it all apart anymore and it destroys me until I can build myself back up again. And I know lots of autistic people who say the same, so fuck you, SB-C. :-P

The ironic bit is it is some of the same parts of me that cause this, that create the kind of art I create in the first place. How the hell do other autistic artists handle this? And yes I had an iPod with earphones, a toy car, and all that kind of stuff. It helped me function against the sensory onslaught as well as I managed. But not against the people.

“

in fact, my son identified with animals more than humans because of not having speech, this was not obvious, as his sensory acuteness led to barking, etc., being aversive.

however, i came to realize that some of the reaction was due to his other kind of sensitivity…he grieved over dogs barking yet no one responding. 

also, i think a lot of his anxiety associated with nervous pent up animal behavior is empathy therewith.

he was the one who taught me that siamese cats, at least, have language. i had no idea until he typed for me what his sister’s cats sounds meant. he had matter-of-factly taken them for words….and turned out to be right. 

my son, now 21, has taught me much about how outmoded many of our larger society’s ideas about intelligence are….

”

“I don’t mind that I have to do this work. I enjoy intellectual challenge, I am interested in learning about how people’s minds work, and the sense of achievement when I manage to connect meaningfully is exhilarating. I don’t think communication would be nearly as interesting and exciting if it were something that just came naturally to me. But I do mind when in spite of so much effort I still miss cues, and someone who has much better inherent communication ability than I do but who has not even taken a close enough look at my perspective to notice the enormity of the chasm between us tells me that my failure to understand is because I lack “empathy”. If I know that I do not understand people and I devote all this energy and effort to figuring them out, do I have more or less empathy than people who not only do not understand me, but who do not even notice that they do not understand me?”