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5:39pm August 2, 2014

dendriforming:

I was introduced to Autreat through people talking on LiveJournal about how attending was a great way to tell whether you’re autistic or not. If interacting there was totally comfortable, you almost certainly were autistic. If not, you probably weren’t.

This hurt me a lot. I used to leave Autreat really scared that I was faking. Because in non-autistic space, I often only have access to words about very specific topics (some of the topics I know, others are really specific and unpredictable even to me), or words that are part of very common social scripts. This stays true when I’m around other autistic people. Conversation doesn’t just… flow for me at Autreat, the way I’ve heard other people describe.

The shape I tried to fit this into was that I was bad at initiating. Putting on my green badge was supposed to solve this. Often it didn’t. Often it just got me in interactions I still wasn’t equipped to participate in.

At AACC, I was able to do non-word interactions. And so I was able to leave with this diffuse feeling of “I’m real. I’m okay.” So far, it’s sticking. It’s really comfortable.

I really want to figure out how to make this stay possible (and get even easier to find) for those of us who need these kinds of interactions in order for “autistic space” to be our autistic space too.

That.  Is.  Horrible.

That anyone ever said “if not, you probably weren’t”.

I have never been comfortable interacting at Autreat.

Except in tiny groups of tiny amounts of people who were nothing like anyone else at Autreat.

I have found interacting at Autreat to be a horrible, draining experience in which who I was, was never acknowledged as a person at all.  Yes, I got accolades from some people, but that’s not the same as getting person-to-person respect.

Sitting in a group of (I’m just saying this to evoke the stereotypes, because I’m not able to use the right words) ultra-high-functioning aspies one of whom is talking about how she works with low-functioning autistic people.  And every time I object to the way she describes them, she gives me a pitying look, and other people start giving me a pitying look, and the look says, “You don’t understand the sort of people she’s talking about, and you don’t even understand that you don’t understand.  You don’t understand how low-functioning they are.  You don’t understand what low functioning means.  You don’t understand – they’re RETARDED, don’t you know what retarded means?”  And my staff person, who may or may not have a low IQ, says “Oh so am I a low functioning NT then?” and they all get flustered.  And I end up starting to shut down, becoming totally incapable of communication before all of their eyes, becoming incapable of understanding their words, incapable of understanding anything at all.

And my last thought as my thoughts are fading out is “I must get out of this place, I have to get out of here, or I will become Exhibit A, and who knows what they will think of me and what I’m doing?” so I bolt up and run out of the room, which they interpret as storming out in anger, I learn later.  It was more that my legs had two speeds, nonexistent and fast, no slow in between.  Which they’d understand if they understood anything about types of autism other than their own.

The same Autreat I ended up so overloaded that I ended up finding some designated spot I was allowed to scream, and then screaming, and screaming, and screaming, and screaming, and screaming.  I remember being unable to understand anything beyond light and dark, and chasing my shadow in circles and not knowing it was my shadow.  I remember pissing all over myself.  I remember needing to be guided back to my room, and literally bouncing off all the walls because my legs wouldn’t stop moving, and so they’d move until I hit a wall and then I’d turn and walk until I hit a wall and my staff had to guide me down the hall into a bathroom and hose me down in the shower and help me change.

But you see, I don’t understand what low functioning means.

And I guarantee you that no matter how overloaded anyone in that group of people got, they were not experiencing what I was experiencing.  Because I know them well.  I know what their limits are, I know their lower limits when they shut down, and their lower limits when they shut down looked like a good day for me back then.

I loved some of these people, mind you.  These were friends of mine.  Online friends, anyway.  But there was a gap there, a gap that they couldn’t see, and I couldn’t bridge.

I saw another person there who was being left out of everything and instantly picked up on that and struck up a years-long friendship with him.  He was living in an institution and trying to get out.  I still don’t know if he has.  He was trapped between the mental health system and the developmental service system, neither of them really wanting him, both of them trying to pawn him off on the other, stuck in a horrible board and care home where he was being sexually abused by his roommate and nobody was doing a thing, and his mother wanted to keep him there because she wanted him someplace “safe” when she died, and he couldn’t see his life beyond the next good “program”.

He didn’t fit in well with Autreat either and I guarantee you he’s autistic.

For me, socializing at Autreat has always been hard, really hard, because the main people who set the tone for Autreat socializing are people who consider my natural state to be a sign of overload, shutdown, and discomfort.  They are also, for the most part, not very ‘sensing’, and can’t interact with me on that level, when interacting on the sensing level is one of the main reasons I’d go anywhere to interact with anyone in person in the first place.

But they also have a great need to believe that they are inclusive, and that blinds them to how exclusive they can be.  It’s not that they’re exclusive on purpose.  It’s that their social world is built up around a certain kind of autistic person, or a certain few kinds of autistic people, and while that has always included a smattering of people like me, we have never been the main focus, and as time has gone on there have been less and less of us, and more and more other sorts of autistic people.

And that is wonderful for those sorts of autistic people and I would do a lot to give that sort of autistic person an experience of belonging such as they could gain from Autreat.

But this idea that Autreat socializing is the litmus test of autism rubs me the wrong way in a horrible, horrible way because I’ve seen that idea floating around for years and it’s just not true.

Autreat claims to have always included people labeled low functioning.  It’s true that those of us who have attracted that label have always been a part of ANI.  It is not true that we have been as fully included there as other types of autistic people.  We talk to each other, we talk about this, we know about this.  We know that if you want a place where there are more people who have been labeled low functioning, you go to AutCom, despite all its own limitations.  Lots of Autreat people pooh-pooh AutCom because some of its organizers are very condescending.  Which is true (but it’s true of Autreat, too, come on…).  But at the same time, AutCom is a place where I feel less like a freak when my body won’t do what I tell it to.  At Autreat, when people see my body do certain things they’re not used to, they have no idea what’s going on, so they make wild and inaccurate guesses.  At AutCom, everyone understands implicitly.

This is not a recommendation of AutCom either.  There are lots of problems with that place.  Lots.  It’s just, on the basis of “where I want to be when my body and my mind are running on two entirely different tracks” I’d rather be at AutCom any day, because it’s full of people whose bodies and minds are running on two different tracks far more than mine normally is, and that sort of thing is expected and accepted there.

Of course at AutCom your problem will be if you’re a “high functioning” person who can’t do something that a “low functioning” person has no problem doing.  Then you’ll get treated like dirt.  Because their assumption there is that if you can speak (or speak without typing first anyway) then you can handle any situation and do all kinds of things that you may not be able to do, because they have so little experience with the varieties of autism that happen in verbal or semi-verbal people.  So to a lot of people there, being verbal (or partially verbal, they don’t differentiate) is being almost-NT.  Basically.

Which is why when you go to AutCom now that it’s more a mix of autistic people, you’ll often see all the verbal people sitting together in one area and all the nonverbal people in other places.  Again, like Autreat, it’s not really inclusive of all types of autistic people, it’s just integrated.  And then only somewhat – speaking of both conferences there.

But no.  I have never in my life felt comfortable socializing at Autreat, except with individual people who were a lot like me.  The condescension I have received and watched other nonverbal people receive there is super-high.  One time some of us tried to give a talk about functioning labels and why they don’t work, only to hear people saying “Why do we need a talk like this?  This is Autreat, we all understand this!” right as people were doing the very same things we talked about as bad things, within our talks.  (This is what I heard – I was only there remotely, due to illness, as I recall.  The other speakers were a nonverbal boy and his mom who is an amazing autism researcher.  I’ve roomed with them twice at Autreat and he was one of the few people I could interact with without feeling weird.)

By feeling weird I mean… most people at Autreat, in order to interact with them it takes almost as much effort as it takes to interact with an NT.  They aren’t my subtype of autistic person, they don’t understand me readily, I don’t understand them readily, and they generally have a pile of stereotypes they’re either putting on me or taking off of me at will – I’m low functioning except when I’m not.  If they’re discussing “low functioning people” then they don’t mean me and I shouldn’t take offense, but other times they very much do mean me.

And every autistic person I know who fits a certain description, has had problems like this.  It’s not about whether you’re verbal or not, although being nonverbal doesn’t help.  Part of it’s a class thing, definitely.  Part of it has to do with whether you can afford to bring staff to help you with stuff or not.  Part of it has to do with all these various abilities that some people there have, and others don’t.

And especially this tendency to assume that when a verbal person goes nonverbal then it’s a bad thing or a sign of shutdown.  And a tendency to assume that if a nonverbal person isn’t carrying a communication device at all times then something is very wrong.  And all these assumptions about what it means to be nonverbal.  And what it means to be low functioning.  And some of them may not say low functioning anymore but you can tell they think it.

And the things I’ve sensed there socially, the things I can’t even put into words.  The condescension.  The glances exchanged over the top of my head, the ones saying I’m an idiot who doesn’t understand something basic, or refuses to understand something basic because they think I’m holding onto a point for ideological reasons rather than because they may actually be wrong about someone… the sidelong glances, the uncomfortable sideways movements, the wish that I’d just stop saying things, stop thinking things, stop caring about certain things, stop being so politically correct when we all know Those People can’t understand things the way We Can.

The girl who walked up to the nonverbal 13-year-old boy who was in university at the time, and tried, in a sing-song voice, to teach him to say “bubble”.  The boy who so badly wanted to fit in there that he sat there mouthing the word “bubble” over and over, this boy with a vocabulary in excess of his linguist mother.  Nobody but me and his mother noticed the price he was paying for being there.

I remember my first Autreat, and noticing that the nonverbal people were always with their staff people and set apart from everyone else.  (I was semi-verbal that Autreat:  Could speak about half the time.  Could function none of the time. Was a liability to anyone who had to deal with me, as far as I know, because I was in constant crisis like the floor was falling out from under me continually.  Made it to only two workshops.  One of which I was shaking so hard I rattled the entire, large, floor of the cabin we were in.  Falling apart, constantly, everything falling apart, only to be approached by a woman who was functioning perfectly well but wanted to talk to me all about how low functioning she was and how high functioning I was, based entirely on childhood history that was 20 years gone for her and 10 years gone for me at that point.  Someone chased her away from me eventually, after declaring how weirdly ironic it was that she’d picked the one person who was having the most trouble functioning, to give her apparently well-patented “I’m lower functioning than all of thou” speech to.)

Mind you, I’m not claiming to be low functioning, or high functioning, I don’t believe in those categories.  But there are real differences between how autistic people function, and Autreat is for a specific group or groups of autistic people who function in specific certain ways, and who are not used to anyone who falls outside of their normal categories.  They didn’t intend for things to be that way, it’s what happens when a group sprouts up organically from a group of friends who all clicked really well together, and starts growing from there.  But that’s what it has become.

I want to go to somewhere where I would never have to type a single word the entire time, and could interact with people on a sensing level, and which would be full of people (both autistic and nonautistic) who could do the same, and that would be wonderful and exciting and fun.

And totally confusing and disorienting for most Autreat people.  As confusing and disorienting as Autreat is for me.