as small as a world and as large as alone

5:45am October 22, 2013

madeofpatterns:

auti-stim:

madeofpatterns:

thegreenanole:

Trying to find the right words: devilsmoon: madeofpatterns: sensory dependence is just as much of an…

youneedacat:

devilsmoon:

madeofpatterns:

devilsmoon:

madeofpatterns:

sensory dependence is just as much of an access issue as sensory defensiveness

Yet we end up having to sacrifice that for others lot in mixed autistic space.

When there are competing access needs, stuff gets complicated. And sometimes it takes a lot of…

It often fees like that in the autistic spaces. I have to keep my voice down, not have my music loud, if I am bouncing or excited I have to ‘calm down’ We’re the ‘annoying’ ones the ‘manic’ ones our sensory needs are on the other end of the spectrum and we have to sacrifice our needs because it’s much more comfortable and accomodatable if the defensive people have those needs satiated. But fuck me if I want spin in circles and listen to heavy bass all day.

ugh I just have a lot of feelings about being the odd one out in the my ASAN meetings.

For me a bit one is…

When I get overloaded, my voice does things I have a hard time controlling. It squeals, meows, makes an assortment of noises, sometimes very sudden and intense ones. Sometimes it sings or hums or repeats words over and over, etc.

And… given that I’m both sensory seeking and sensory defensive, even I have trouble being around that.

But I’m far more comfortable in places that allow autistic people to be like that without making it sound like we’re making things horrible for other people.

If I’m in a place where I can easily and frequently hear the sounds of other autistic people’s voices doing things like that, then I feel far more at home and comfortable and safe than in a place where everyone’s expected to be dead quiet.

(Also for complicated reasons I feel more comfortable when I’m able to hear such things in general. It tells me I’m not in a place where everyone is nondisabled, in a way that not much else could rapidly tell me such a thing.)

I don’t like being in places where ‘having good boundaries’ is defined as ‘the moment your involuntary actions are too much for someone else you’re doing something bad no matter why you’re doing it’.

I don’t like being in places where it’s Not Okay to be disabled or where stims have to be repressed, and one sign of a place where it is okay to be disabled is hearing those sounds.

I can be situationally sensorily defensive even as at other times I’m sensory seeking. But if my sensory defensiveness crops up when I don’t want it to - ie when I hear those high pitches squeals (certain high pitched sounds can bother me) I tell myself those are sounds of liberation and joyfulness (I hope it’s joyfulness!) and that the fact that folks are free to make such noises is a symbol of our autistic liberation. And then I smile, and am glad people can make such noises.

(Of course if it begins to hurt my ears I might step into another room but I try to avoid telling people why so as not to make anyone feel bad or like they have to stop. It is good that they can be free at such places. Not only good but essential.)

Only rarely, rarely - like three times a year if even that - do I make an involuntary high pitched sound but when I do… I think it happens when I’m very happy about something.)

I have to put up with painful things all the damn time for all kinds of bullshit reasons.

Putting up with it for the sake of respecting the right of other people to be in a space… that’s a good reason.

Indeed, I am much more likely to try to put up with a thing if I know the other person/people NEED to do it. It is still going to wear me down, but I can tolerate it for a bit. Then I might have to remove myself from the area for a while. I also explain this to whomever I am around — basically my allistic partner, but who shares a lot in common with me for different reasons. She knows I can only take so much of hearing her eat or hearing her play a game and the controller keys clack but I know it makes her happy to play a game with a friend of hers online. We both acknowledge sometimes we need to walk away for a bit to do whatever we need to do not to be overstimulated, even if it is because of the other person. Like right now, I am getting ready to leave the room while she eats.

Yes to all of that.

Although, sometimes I’ve realized that things I thought were sensory issues were really mostly my own sense of ableism and entitlement.

It’s harder for me to tolerate disabled people making annoying noises if I’m *angry* that they’re making annoying noises because I feel entitled to have an environment free of disabled people who do annoying things.

I think I mostly succeed at not feeling that way, these days, and at pushing it away when I do feel that way.

But it’s definitely something I’ve noticed has been a problem with my attitude towards other disabled people, and I think it’s really common.

Being disabled isn’t an automatic screen against being ableist against other disabled people. (And no, I’m not calling that internalized ableism - it’s not *internalized* when I’m directing it at other people and expecting my needs to matter more than theirs.)

Oh wow, thank you for being honest about that.  I never even thought that this might be one of the reasons behind it for some people.  Obviously it isn’t for everyone.  But if it is for you, then it is for others.  And I really respect when people are able to see the ugly side of their own minds, because I spend a lot of time trying to dig through my own.  

And boy is there some awful ableism in there for me, too.  In particular, I get horribly jealous of people who have never had to prove to anyone that they’re actually disabled.  To the point that this jealousy overlooks the awful things that people have to go through when they are assumed disabled so thoroughly that nobody would question it.  (And yet, at the same time, in some situations I am that exact sort of person, who doesn’t have to prove it because it’s so damn obvious, and from those situations I really ought to know better.  My brain is a really messed up and contradictory place.)

But anyway.  I never thought of that.

But I do think there’s something messed up and ableist going on when a particular place always always always leans in the direction of “We’re going to have to ask you to leave or quiet down because your actions are making people uncomfortable for sensory reasons.”

In particular I remember years back these big arguments over people who shut down versus people who melt down.

I both shut down and melt down, mind you.

These are both responses to overload.  I’ll explain the definitions because people have gotten them confused over the years.  

Shutdowns involve becoming quieter and losing abilities and sometimes becoming unable to move, unable to talk, unable to function at all.

Meltdowns can involve the same losses of skill.  But they are more likely to involve doing something loud like screaming, or thrashing around physically, or cussing, or becoming violent, or some other outwardly-directed physical action.

So shutdowns tend to involve quieting down and becoming more inward-directed and losing things, while meltdowns may also involve losing things, but are more likely to seem outward-directed and loud and thrashy and perhaps even violent or offensive to others.

And the place in question entirely catered to people more likely to shut down than to melt down.  And in discussions of this problem, a lot of people who shut down but did not melt down made a lot of claims about how shutting down is so much worse than melting down could ever be (many of them with no experiences to back this up, mind you), and that other people’s meltdowns induced shutdowns in themselves, and that since shutdowns were the ultimate in awful experiences then people who had meltdowns should somehow be able to leave the room or not show up in the first place because it might be overloading or cause shutdowns in others or “trigger them” in regards to PTSD.

(I knew that PTSD triggers were not actually a major concern there.  Not across the board.  Because people who had been in institutions had way-more-frequent-than-usual PTSD problems there, because so many people there had mastered the art of behaving similarly to staff.  But we were not allowed to bring this up, because unless we could tell them exactly and precisely what they were doing wrong in precise and exact language, then we were doing something terrible to them.  Because apparently people who are highly triggered and in an environment of skepticism and hostility about the source of the triggering, should be able to produce lengthy explanations, in words, for the exact reasons that we are triggered.  Yeah.  And when we did, on rare occasions, manage to explain what was going on, we were told we were being unfair.  I was even at one point told that I had an “abusive communication style” because I was accusing people of doing damaging things without having words for why.  Because that’s so totally the same as when an abuser accuses you of doing something wrong and deliberately withholds information that would let you know how to do it right.  They had very little ability to understand the power dynamics involved, so… it got ugly and unpleasant and I apparently alienated a lot of people because my communication style wasn’t perfect.  Which, by the way?  Is why that guy years ago who was talking about how there are autistic people who get treated badly for their communication styles?  And then specifically told me, personally, that I could never claim to have ever been in such a position because I was such an eloquent communicator who hated people who had communication problems?  Was totally wrong and made me unsure whether to laugh or cry.  I could’ve given him the names of dozens of people who could attest to the messes I’ve gotten in because my communication style was deemed too ugly by certain people.)

Anyway…

So there was this big split between people who had meltdowns (whether or not we also had shutdowns), and people who had exclusively shutdowns.  And people who exclusively had shutdowns were constantly trying to explain to the rest of us that shutdowns are the most unpleasant possible response to overload on earth.  Even if we already knew what shutdowns were like because meltdowns and shutdowns are not mutually exclusive.

And people who had only shutdowns won out, because in that particular place, the people who win out are always the people who are both quiet and have extreme sensory sensitivities.  

They never take into account that loud people can have extreme sensory sensitivities too, because they assume that everyone with extreme sensory sensitivities would be magically as quiet as they are.  Which stems from the fact that most of them are people with a good deal of ability to control their bodies.  And if they lack the ability to control their bodies, they mostly lack it in the direction of “I can’t move when I want to,” rarely in the direction of “I am moving in ways I can’t stop.”  And that in turn is because they’re seriously overrepresented by “aspie” types (not talking about diagnosis, talking about a general stereotype that I don’t have a better word for)… people who are fairly verbal, often have advanced degrees, more cerebral than sensual, etc.  And such people tend to be able to be quiet better, and all the rest.

And just… I love a lot of them, I really do, these are my friends I’m talking about, but while they were “coming home,” I was struggling to function.  I remember I used to stand up and dart out of the room, and they thought I was storming out because of something that had been said… they had no idea that in order to function according to their specifications I had to run out of the room constantly just in order to avoid making the kind of noises they didn’t want, or throwing things, or some other indicator that I was not a good fit for their aspie utopia.  I remember having to find a place to go and scream where none of them would be able to hear me, because screaming was against the rules.  Against the rules.

I became so shut down by all that that after I managed to hold in the scream.  And then scream.  I ended up losing huge chunks of my ability to think.  I vaguely remember this mindset where I could mostly just tell light from shadow, but not hold developed thoughts in my mind, and I chased my shadow around in circles, and I think I urinated all over myself in the process.  Screamed my throat raw.  Then I lost all control of my body and had to be led around by my staff person.

And that is the kind of price I paid to fit myself into their idealized autistic environment.  I don’t think most of them would’ve paid the same price to be exposed to me not fitting in perfectly.  But I was treated as if they would.  

My body has changed a lot, by now.

I’ve lost the constant fits of adrenaline that used to drive all those involuntary movements and screaming and stuff like that.  I still do it, but not as often, not as constantly.

I’ve lost… something, when I developed the more intense neuromuscular disorder.  It makes me much more outwardly calm than I used to be.  And much more likely to shut down rather than melt down.

And all of these things make it easier for me to function in an environment like that without breaking rules.

But I still don’t feel comfortable in environments like that.

I also hate being made into an honorary aspie.

Like I’ve been to mixed events.  Like where some people are people who’ve been considered low functioning all their lives, some people are people who’ve been considered high functioning all their lives.  I don’t really fit into either category and don’t like when people force-fit me into either category.  But I’ve had the latter group of people at such events sort of cluster around me and treat me as if I’m just like them except I type instead of talk… and that feels just as wrong as when FC users assume I’ve had the same history most of them have had.  Feels like being made invisible.

And that happens whenever I’m kind of the token one who can’t talk but “we almost can’t tell because you type so fast!”  Ugh.

Wish I could, somewhere, just be me, and be understood to be me.

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