More Toxic Lessons Learned

A common theme of my youth was that I was worth less if I didn't have friends and a social life. Another prominent idea was that no matter what, if people didn't like me, it was my fault and my responsibility to change that. Having an opinion on what I'd like or not like to do or expressing discomfort with someone or something was being "bossy" or "too demanding" or "high maintenance", and none of these things are ok to be.

So I was this kid who was told that social approval defined my worth, and who was told that if I in any way challenged what my social peers decided to do I was screwing that up. Basically the message I got, both directly and indirectly, was that people were doing me a favor by tolerating my presence at all, so I should shut the hell up and be grateful and go along with whatever.

Ask me if I think my worth is determined by social approval and I'll say hell no, because it isn't and never was. If people don't like me is it my fault? Well, maybe, but that's their loss now isn't it?

But some of that toxic stuff internalized. I know in my head that people aren't doing me a favor hanging out with me, but that doesn't mean I really know it. I rarely feel comfortable asking for a plan change, and while I call out ableism frequently, I don't feel allowed to be as intense about it as I should if it's consistent and consistently minimized. If someone's behavior is unacceptable to me, I'm more likely to remove myself then request or demand a change, even if I know and like everyone else there. They may be my friends, but I "know" that I'm not allowed to be uncomfortable and ask to have that discomfort remedied, because I "know" they only put up with me as charity or something.

That is some messed up toxic shit, and I learned it from people who supposedly wanted the best for me. I'm an adult and I've been demanding to be seen as a whole, worthwhile, unbroken human being for nearly half my life, yet I still can't totally shake this crap. I know it's bullshit. I know I have the same right to express my needs in a social setting as everyone else.

But that knowing doesn't suck the poison out, now does it?

They taught me to not opine.

One of the main goals of autism 'treatment' is passivity. Unfortunately, they succeed at that. A lot.

Those of you who know me are laughing your asses off right now, because "passive" isn't the adjective most people think of when they think of me. But none of you know what it is to be inside my head.

They taught me that having an opinion is wrong. They taught me that wanting a say in what happens is wrong. They taught me that what I think and feel is far less valid than what anyone else thinks, feels, and wants. They taught me that standing my ground is among the worst things I can do.

And I internalized that.

I know, none of you believe me, because if there's anything I am known for it is standing my ground. But keep in mind-I don't give 2 shits what most people think, especially internet people. If I do give 2 shits what someone thinks on the internet, chances are good we are on the same side. We are fighting through the same things. And the stuff I stand my ground on, that I fight for with the whole of my being, it's often a literal matter of life and death-if not my life, someone's, somewhere. And that's worth it.

But what you aren't seeing is the panic and freeze. Every time I am asked for an opinion or a quick decision, even one that doesn't matter-often especially one that doesn't matter-my mind shuts down and starts racing at the same time. Do they actually want my opinion or are they checking to see that I have the right one? What if my opinion is the wrong one? Oh god. It's easier to not have an opinion. I don't have time to figure out the motive of asking and what my opinion is or how to say it in a palatable way. I'm not good at palatable ways, not even for innocuous things.

The way I do advocacy is the only way I can. Brute forcing through the panic, because those beliefs are more important than the very real fear of very real, terrifying consequences. It isn't easy. At all. It's like having to face a rational fear that developed into a phobia every day. But I have to allocate that energy-it's worth it for matters of life and death. It's worth it when other people like me are affected too. It's worth it when the listener doesn't immediately particularly matter to me (sorry. That's how it is) or they can't do anything to me.

But that kind of energy, on everything? I can't do it. The fear is too much.

Fuck yeah, passivity training. Hope you're happy.

A disclaimer I am no longer making.

Every time an autistic person says anything, ever, we have to append a big disclaimer. The "This only applies to me and my situation and I know nothing about your autistic child/cousin/sibling/indentured servant so take it with a grain of salt". It possibly has to have a functioning label attached too, depending on how much what we're saying pisses off the listeners.

Yeah. I'm not making that disclaimer anymore.

Obviously I speak from my experience. I have no other experiences from which to speak. I know stuff my peers say, and I can incorporate that into a more detailed response, but that doesn't change that my experience is mine & that is where I am speaking from. Functioning labels are a steaming pile & only useful when allistics want autistic people to shush, so I'm committing myself more fully to abandoning them, too.

No one else is expected to make a disclaimer like that when talking their own lived experience (please correct me if I'm wrong; I've never had to append such a thing to any statement I've made about being a woman or biracial, but that doesn't mean no one has). But the Just My Situation disclaimer is yet another tool used to silence what we say, & I am not going to condone that action by helping bring it to be.

Just like everyone else, I talk from what I know. I speak honestly from what I know. The palatability of what I say has nothing to do with its global applicability, & it is disingenuous to make such a get out of guilt free card for people who may be doing or condoning things that are really awful by making that kind of loophole available.

So, since that whole thing should be understood-that K knows what K knows-I'm not saying it every time I talk anymore. My goal in speaking isn't to make people feel bad about themselves, or good about themselves either. It's to say what I feel needs saying. If it's useful in a way that makes you feel good, fabulous. If it makes you feel bad, look at why it makes you feel bad. Then take what utility you can from that.

The disclaimer get out of guilt free card is now offline.

New Project

I have a new project, and if people wanna help, they are awesome and amazing.

Basically, a lot of stuff exists to help NT's cope with their autistic kid/employee/husband (why is it ALWAYS husbands? Anyway...).

But there's nothing on interneurology friendships. Nothing. Nada. This is a deficiency I wish to rectify.

So if you're an autistic person who has good things to say about nonautistic friends, and things to say on the making and maintaining of those connections, and you want to, message me in some way. Or leave a comment and we'll get a conversation going. If you're a neurotypical/nonautistic person who has or had good connections with autistic people, same.

Thank yooooou!

More Consequences of Awareness

Kay.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).

A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".

I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.

But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".

I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.

Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...

None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.

"Unclip."

"uh, what"

"Unclip. There seems to be negative energy and emotions.:

"...what"

Blah blah unsafe blah blah not concentrating blah blah frustrated.

"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".

"Unclip & we can have a discussion"

"...I want a cognitive interpreter..."

Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.

No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.

I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.

Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.

Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!

Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!

Except we aren't. If this is 'awareness', ignorance really is bliss.

Epilepsy and Gymnastics

This one is another "in my experience" one. This is in no way shape or form medical advice, and in fact I have met doctors who think that my choice of sport was evidence of a subconscious deathwish.

I've been participating in some form of gymnastics or another for years. I've had epilepsy for years. Most of these years overlap. I've dealt with medication changes, seizure fallout, side effects, and all the other joys while also enjoying a high-flying sport.

My primary form of gymnastics was tumbling and trampoline. My best event was always tumbling because everything is entirely what I can do with my own power. Sometimes my skills were a bit sluggish, but they weren't ever scary or particularly dangerous. Trampoline was my worst because you have to hit the trampoline 10 times and every change in body position or proprioception is magnified by the elasticity of the trampoline. It's also easy to get a little off if you aren't able to focus. Double mini trampoline is only 2 skills, so it was my best when I was sluggy. The worst I experienced with epilepsy meeting tumbling and trampoline was having a partial complex at a meet. I had to withdraw after my coach realized that everything I was doing during warmup was autopilot. I've never had a tonic-clonic while in the air.

I did artistic gymnastics as well. Floor was my best event for much the same reason tumbling was--it's what you can do under your own power--so even when I was a bit wonky, I could make something work. I was very good at beam in practice. At meets or during a medication change, beam went to hell because it's all about precision and attack, which I do not have when my body feels alien. Postictally I was pretty awful at beam, but nowhere near as bad as I could be on vault. Vault involves running as fast as you can at a stationary object and hitting a springboard exactly correctly so you can fly over it. Speed doesn't happen postictally. Visual perception doesn't happen postictally. I know exactly how hard I can run into a vault, and the answer is rib-dislocation-hard. Uneven bars was the hardest for me because being even a little off makes it hard to muscle through things, and every time my body or brain changed I had to completely adjust the timing of moves. It was never a strength problem, just a consistency issue.

I came mightily close to seizures at a couple of artistic meets because of the techno floor music trend, so I did compete while heavily benzodiazepined a few times. Sluggish gymnastics lead to sluggish scores, but I didn't ever get hurt, fortunately.

There were a few things I needed to do to make taking epilepsy to the gym relatively safe. First, I needed to get very familiar with the difference between "aura" and "I need to eat/I'm working too hard/I'm tired/side effects". Second, I needed to disclose to my coaches that I have seizures, what they look like, and what to do if they occur. We needed to discuss a seizure plan, and for a period of time I kept rescue medication in the gym office. Third, during every medication change I had to chart side effects that might matter & we had to adjust expectations during workouts and competitions. For a while I was playing catch-up with private lessons since a particularly hard period made learning anything impossible.

My coaches ended up learning a few of the subtle signs that indicated a seizure was imminent. We had an agreement that they could send me for a snack & ask me to get off the equipment if I was worrying them. If I needed to take a rescue med, it was fine and I didn't need to announce it. Part of our agreement was that I was to wear medical identification at all times gymnastic & I was to carry a seizure protocol card in case they weren't the very first people around if I seized.

There was a lot of planning involved, but I got to do the sport I love in face of prejudices that say I shouldn't have. I still love gymnastics-it makes me feel invincible, like I can fly, and I wouldn't trade that experience for anything.

Hit by a Neurological Truck

This is my last generic "so tell me about your epilepsy" post. I'm casting about my brain for topics that aren't wangst now, bc 23 days of "people with strobe lights and subwoofers should DIAF would get real old real fast.

The night this picture was taken (and I don't remember taking it) I had had a number of seizures. A double digit number of seizures. I looked and felt like shit.

That's pretty much the standard post seizure thing. I can't really focus. I feel like I got hit by a truck. Words aren't really happening. Understanding language may not be happening. Coordination, not happening. Visual processing, not happening. Moving fast, not happening. I'm tired, have a headache, afraid of stairs because they look funny, probably not really so good with the sense making, a little wobbly, and if I can process what you say, I've got receptive logic, but I don't have the language for expressive logic.

Right after a seizure I can sign but not speak and I want to sleep and don't want to move and I look like that. I actually probably do want company, and I probably want said company to talk to me as long as they aren't upset. I don't know why either, it's just a pattern. I guess if I feel like shit, at least I'm not alone feeling like shit.

I remember pretty much nothing from the few hours following a seizure, to the point of not always knowing how I got where I am. Good times, right?

The day after I look and feel like crap too, but I can usually get through the day. It's a headachey, cognitively screwy, very tired functioning, but it is functioning.

The day after the pic at the top:

My seizure first aid

In someone with documented epilepsy, a seizure is not usually an emergency. The line for "emergency" is drawn in different places, usually involving things like injury, right after a knock to the head, excessively long (usually 5 minutes), or repeated seizures without regaining consciousness in between.

For absence seizures, I don't need or want anything. If I have a whole bunch, maybe tell me (and be prepared for me to say nonono) , if I have one on the stairs or something I'd rather not fall down too many. That's about it.

With tonic-clonic, get out a watch & time that shit. If you stick something in my mouth, I will assume that you don't hold your teeth in high regard either & consider taking them off your hands, and if you try to hold me down we will likely both get hurt. Just turn me on my side & put something under my head if you can do that without hurting yourself-I'm remarkably durable-otherwise, just wait till it's over & don't let me choke on my own drool. Isn't that an attractive mind picture?

Usually I have partial complex, which take a little more finesse since I can react to my surroundings (ish. not quite logically, but there are reactions). I vehemently do not want an ambulance. Go ahead and time things, but as soon as I start signing at you the timer stops. If I'm doing the wandering thing, don't let me walk into traffic. But don't be abrupt about that, because, again, we'll both get hurt. No matter what you do, stay calm. Otherwise I'll freak out and not understand why. Keep your voice level-I may not understand the words, but I do pick up on emotional tone, & a tired and confused post-seizure period is way better than an upset and anxious one.

If it actually IS an emergency, well, that's why I wear a medicalert, but it almost never is.