Sunday, March 26, 2017

Why gymnastics? (athletic autistic series)

My longest lasting and arguably most successful athletic endeavor was gymnastics. I took tumbling classes when i was little, messed around in the yard, took classes again, competed, coached, competed while coaching, retired suddenly and unwillingly, coached more, did 2 more meets while coaching, and judged.

I do a lot of things, I love a lot of things, but gymnastics is arguably my soul. It's been an enduring passion. And my mother hated it, but I loved it enough to keep fighting to do it.

There's reasons for gymnastics of all things. They're not the kid doing cartwheels on the playground legends you hear, but they are reasons nonetheless.

I don't look like a gymnast. Well, that's untrue actually. I'm built basically exactly like Svetlana Boginskaya, a gymnastics legend who competed in 3 Olympics. But she doesn't look like your classic 80s & 90s gymnast either. I'm legs and arms and limbs and moved like I was only vaguely aware of my extremities. But as far as my mom was concerned, I was going to be taller than 5' so I was too tall to be a gymnast, she can't touch her toes so I am not flexible enough to be a gymnast (yes, really, she said that), and basically it was the worst sport ever. My mom loathed my choice in sports until the day she died, but it was my first love.

The first thing that drew me to the gym is that it's pretty. It's so pretty. The physics, just watching, demand to be analyzed. I found that captivating. And each gymnast makes each apparatus her own. The individual nature also really worked for me. I didn't quite understand the whole team competition thing, and until you're competing for college or your country you're competing as an individual anyway. I could only mess it up for myself, not for anyone else. No one could be mad at me for not being able to do what they wanted of me. My performance was only affecting me. There were no mystical codes of how to teamwork in gymnastics like there are in team sports.

The things that kept me in the gym are numerous. I had gifted coaches--not gifted in the art of creating little gym-bots who win no matter what, but gifted in the art of meeting their athletes where they are, in finding new ways to approach challenging skills, in knowing when to push and when to stop pushing. They worked with us rather than on us. And they trained everyone as though they'd compete some day, instead of deciding some kids had what it takes and some never will early in a budding gymnast's career. In one of those gyms I'd have been done very quickly, as it was a long process for me to develop any skill at all.

The sensory aspects are of course the thing people think of when they think of autistic gymnast, and that's true. I like crashing into things. I got to crash into the ground a lot. I don't get dizzy but I do love to try. I got to try in new and exciting ways in the gym. Things bounce, and spinning and flipping is a vestibular stimmer's dream.  As far as sensory integration goes, gymnastics was better than any sensory integration therapy available in my hometown, and more fun. But they aren't the only thing.

The thing about gymnastics is that you have never learned all of it. There's always a new skill or a new combination. And you have to adjust your physics just so in order to master it. And perfection is a goal, but it's a goal no one can actually meet, and everyone knows that. Everyone goes for perfect, sure, but it's not like when people seriously think that's a reasonable thing to expect. It was a place where I was allowed to not be perfect, because no one is perfect, and where I was allowed to not know how to do things, because no one knows everything in gymnastics. Even people who have skills named for them don't. Because there's so much to learn and some things just won't ever work for one person and that's ok, you can try something else and that may work better. Being allowed to find things that worked better than the little box my mom and school and everyone wanted for me? That tasted like freedom.

Granted, freedom tastes like sweat and blood and pushups and mats the smell like feet. But it turns out I like pushups and don't mind mats that smell like feet, when my abilities and inabilities are taken into consideration. When my fears are seen as rational. When failing is met with the assumption that I tried my hardest and just couldn't, rather than with the assumption that I am defiant and noncompliant and need to be punished or ignored. It was the first place where I was allowed to not be able to do things without it being treated like I was unable to do them at someone.

Because my failures were treated as part of the learning process instead of as me being a butthead, I learned from them. I was this awkward weak little kid, right? I was made of rubber but seriously just rubber. I was not a naturally strong kid any more than I was a naturally graceful kid. Autistic kids, disabled kids in general really, tend to be treated like anything we can't do on the first try is a thing we will never be able to do, but gymnastics isn't like that. If you can't do the skill, you do more drills, you condition more, you stretch more, you try again. You fall? Try again. You can do it 10% of the time? Try again and then it'll be 20% and then 40% and then 98%. That 2% of the time you can't do the thing you can totally do? That's not because you are autistic or because you are being difficult, it's because no one is actually 100% on anything. Very close yes, but anyone can miss something that they basically have mastered. It happens. It's a thing. Your failures may be vanishingly rare, but anyone can mess up and that's life.

So I found my body parts by finding them over and over and controlling them in gymnastics. Because everyone was learning mastery of their bodies...I learned mastery of my body. And learning to do a backhandspring is way more rewarding than touching nose. When you can do backhandsprings you get to do back tucks. And then back layouts. And then twisting layouts. And on and on and on. When you touch nose you get to listen to other boring orders. The corrections in gymnastics actually mean something. No one was telling me to do things so they could control me. They were telling me to do things so that I could control myself, at greater velocities or amplitudes. Implementing what they told me was rewarding, intrinsically, for me. It didn't earn a token. It meant I did this ridiculously hard thing that I wanted to be able to do for myself. In a world where I was expected to do the things everyone else wanted me to do, it was all about the "do this because then you can do this and that's awesome".

And once I found my body parts? I found poise and confidence too. I was good at something, not because someone built me from raw parts (no more than any other gymnast) but because I did the work. You can't hand over hand all those push ups. Muscles don't work that way. It was a success no one else could claim. Those trophies were mine. Those oohs and aaaahs at the spring show were mine. I learned to cover every inch of ground I walked on, and that I deserved to. It was a place to be proud instead of being ashamed that I care about things. Gymnasts can be intense. It's not a liability to be single minded when you're attacking a new skill.

As I got too injured to continue, I still got to pass on the sport, too. And I get to judge. People never think of autistic people as being good at these things, but we can be. The devil is in the details and gymnastics is all details. Analyzing what is going wrong, conveying it as a coach or quantifying it as a judge, that's totally an autistic-friendly thing to do. Details. Yes I will tell you, young person who wants to fly, every detail. And we will work them out together, and you can defy gravity too.

Gymnastics is why I can do so much of what I do now. It's why I can do the athletic pursuits I still pursue. It's why I can present--and where I learned to own the stage while doing so. It helped me find the edges of my body when early intervention sought to teach me they didn't even exist, that I was just an extension of other people. Gymnastics may very well be why I am still here at all.

So fuck yeah gymnastics.


Saturday, March 25, 2017

I'm kind of a jock and that's ok--series introduction

A common stereotype about autistic people is that we are unathletic, that we are bad at sports, that we don't like to move our bodies.

This is not strictly true. However, our community is full of people who have had really bad experiences with sports and other physical activity because the environment was wrong or the instructors were wrong or the activity was a mismatch. I have had some of those experiences, but I've also had some great ones.

I did gymnastics, and it was wonderful. I danced, and the activity was fun but the people were Problems. I played both wheelchair and on feets basketball (at college and in middle school, respectively) and it worked out ok. I do archery and while my favorite range isn't open in the winter, it's a thing and it works for me. I currently do aikido and it's managing to fill the gymnastics shaped hole in my life enough that I no longer dream about going back to the gym (that's pretty amazing).

There's reasons these things worked. Some are in common among all of them. There's reasons the environments did, or didn't, work. There's common themes. And the prevailing wisdom is that we are bad at moving our bodies and we're in a weird space with access to such activities anyway that it's important to offer an exception, if you will.

So over the next week or so I will be writing about the structured movement things I do, to offer a narrative of "actually we totally can do this".


I'm kind of a jock and that's okay.

Wednesday, March 22, 2017

Your therapy likely IS like that, or at least your attitude is

Another day, another parent going on and on about how their ABA is Not Like That, because reasons.

This is a problem all by itself, but the thing is, the act of doing this very much proved that their ABA is exactly like that, in attitude if not in the wrestling tiny children to the ground mechanics.

Why?

Because it was immediately after an autistic person said "do not come at me with my ABA is Not Like That, and go read The ME Book before defending it at me at all".This is a hard boundary folks. And when parents trample that boundary, they're saying a whole lot.

Namely, they're saying that they do not believe autistic people have a right to have boundaries. Actions speak, folks, and that's what your say. What you want to say is more important than not trampling over a very clear line that is drawn for self protective purposes.

Funny thing, this attitude--is exactly the attitude of ABA based therapies. Autistic people don't get boundaries. Neurotypical people get what they want and to hell with what autistic people need or want, what the Real Person in this situation wants is what matters. No, you don't get to draw the most basic line for self protection, because the Real Person will just ignore it. It inconveniences them. They don't like it.

Speaking of things to not come at me with "well I would respect my child's wishes if they would just tell me". That is the biggest crock of shit and we both know it. You won't respect a clearly stated in concrete direct words boundary from an adult. You want me to believe you'd accept one from a child? No honey no. I know better. You've internalized that autistic people's needs are less worthy than your wants and convenience and desire, and you live in a society that treats children as lesser even when they're abled.

So yeah. Your therapy probably is like that. If it wasn't you'd listen when I told you the prerequisites to having this conversation with me. Your kid needs you to check yourself. Now. Years ago quite possibly. You need to observe their boundaries, and you need to observe mine.

We don't owe you shit. We do it for your kids. Don't break them as badly as we were broken. Observe their boundaries now and make others do the same.

Fix your goddamn attitude.

Wednesday, March 8, 2017

Autism Meet Up Groups ARE NOT for "finding a girlfriend"

Autistic dudes, and yes I do mean dudes, specifically straight cis dudes, and moms of autistic straight dudes as well, we need to have a conversation. By which I mean I am going to tell you to stop doing something, you're going to cry about it, and it's not going to be my problem at all. You're going to persist in making it my problem no matter what I do, but it's not.

Gentlemen, stop going to autism meetups to 'find a girlfriend'. Stop. No. Do not collect go do not collect $200. Do not do this.

I can already see you whining "but how am I supposed to get a girlfriend?" as though that is my responsibility. And that's the problem. Autistic men come to autistic groups with the sole goal of finding someone who will take over for their mom in keeping him fed and all that, and also have sex with them. And that's awful. Don't do that.

First, we do not owe you shit. "We're both autistic and you make my pants tingle" is not a basis for a relationship. I am not your mom. If I wanted a son I'd make one who was smaller than me and who I could raise to not be a manchild who felt entitled to women's labor and attention. I do not want a son. I especially do not want to adopt you and also have sex with you. That dynamic is fucked up, dudes.

Second, you're being awfully presumptuous there. What if I told you--many to most of the people you are assuming are straight women are not? Maybe they aren't straight. Maybe they aren't women. Maybe they are neither straight nor women. But a large number of people you're hitting up for a date are not attracted to men, or not attracted primarily to men, or only sometimes attracted to men, or not attracted to anyone. So you could be the best catch on earth--and, sorry gents, you are not, there's only one of them and I don't know who he is but I highly doubt he is reading this blog--and many a person there who you think you are interested in would never be interested in you!

Third, my dude, "I am a boy, you are a girl, can I make it any more obvious?" is not a basis for a relationship. At all. You have no business "getting a girlfriend" if you can't manage to be friends with people who happen to be girls. You do not just go to the girlfriend store and get monogamous heteronormative bliss off the shelves. You have to meet people. You have to get to know them as people. That trope where people dislike their romantic partner? It does not make sense! It's totally a thing in media but it is not how reality land works. In a healthy relationship, you like each other as people. "Go get a girlfriend" may seem like a milestone for you but that is treating women as objects rather than people. And she may be under loads of pressure to get a boyfriend, but that doesn't mean that you are a good choice for her. Don't be this guy. Just don't.

Fourth, you have to bring something to the table. The guys who go to autism events to "find a girlfriend" tend to bring naught but neediness. If you rely on your mom for your day to day everything, you're probably not dateable. Sorrynotsorry. I'm not in a position to take over for your mom, I can barely take care of myself. You do know that autistic women have difficulties too, right? We totally do. That's...why we are at autism events. Because we are autistic. I can't take over for your mom even if I want to. Which I don't. There's something that makes my nethers whither forever at the idea of adopting a son my age and having sex with him, and that's what so many of these dudes are looking for. No. No. Ugh. I am so very not into that.

And even if you do have your shit as together or more together than I do? That doesn't mean you have attractive qualities. Are you super hot? Funny? Kind? Interesting? A lot of the guys who hit on me at these things are...none of the above. No one likes to date boring unpleasant people. Autistic women are allowed standards. And "well she's really hot and autistic so I want to date her" gets exactly nowhere with me. Great! Your pants are tingling! That is a personal problem! For you to work on! Yourself!

And mothers of autistic straight men, this is for you: do not approach an autistic woman and ask her to go out with your son. Ever. Are you fucking serious what makes you think that is a good idea?

I've been approached by over a dozen mothers who thought I was pretty and would be a good influence on their sons. Lady, no. "Unable to approach me himself" is a hard no. Are you going to follow him into the bedroom and remind him to use a condom too? Where the clitoris is? Nah I can't see you even caring about that part, because you cold approach autistic women to guilt them into dating your son.

That is so inappropriate. What the fuck, allistic moms?


Straight autistic men, if you want to go on dates, be dateable. Clean up yourself. Wear clothes. Clean ones. Every day. Do your own laundry, even. Find hobbies. Find interesting hobbies, not whining about lack of girlfriend. Make friends with no ulterior motives to get in their pants. Be around people you like interacting with. Make friends, and this is important, even with people who don't get your motor going at all. And don't be a jackass trying to make them feel bad about it either, women do not exist as prizes for you to win or things to make your junk happy. When you do meet someone who you are attracted to, don't rush to the "women find autistic men repulsive date me?" thing. That behavior is what women find repulsive. Get to know her as a person. And don't be a whiny pissbaby when things are not mutual.

Be kind. Unlearn bigotry. See people as people. Become an interesting person. Worry about that.

And for fucks sake stop going to autism meetups to "meet a girlfriend". Stop being the reason that autistic women have no social support. We do not like being swarmed by horny entitled dudes. A good organizer will kick your ass out for that. Don't test the mettle of organizers. Organizers, stand up for the women in the group when a man does this.

Also be aware we talk. Every autistic woman I know knows the names of the entitled manchildren who want me to take care of them and their pants tingles. And I know the names of the men who do this to my friends.

Be better than this for the love of all that is holy please.

Friday, March 3, 2017

Disability Day of Mourning: about the victims and no one else

Wednesday was the annual Disability Day of Mourning, when disabled people and our supporters gather and hold vigils and read the names of the hundreds of disabled people murdered by caregivers. In addition to holding meatspace vigils, there is an online vigil and people make their observance known in other ways across social media and in person, as their abilities and inclinations allow.

This post isn't about that much, except that the list is SO LONG. SO. LONG. Y'ALL. Starting with 2016 (it was cold, rainy, and a very late start) it still took half an hour to read names without causes of death. That's upsetting.

But what this post is about is the reactions of...certain individuals...to the existence of DDoM.

The Disability Day of Mourning is about remembering the disabled victims of caregiver violence, who are so often erased from their own stories, who are made to be the bad guys in their own murders. That is what it is about. That is who it is about.

So why are parents of disabled people making it about them? Why is the knee jerk reaction of so many parents "stop demonizing me" and "not all parents" and "acknowledge how hard it is!!!!"

Y'all. Listen to yourselves.

If you did not kill your disabled family member, you don't get a cookie, and DDoM is in no way about you. No shit "not all parents", this is not about parents. It is about disabled people, who are people in our own right, not just as appendages to Real People like yourselves. And everyone goddamn acknowledges your shoes all the fucking time. DDoM started because, after the murder of George Hodgins, the Autism Society of America put out a story about "the tragedy of Elizabeth Hodgins" that didn't even mention George's name. That's how bad the erasure is here.

We needed a vigil, done by us, to have our deaths at least be about us rather than about how we inconvenience those around us.

It is not about you. If you feel attacked by the very existence of an event, one day a year, to remember people murdered by caregivers, dig deep and think about why that is. Do you relate to the killers a bit too much? Do you struggle to see disabled people as people rather than as appendages to those you can see as people? Really contemplate, rather than lashing out at people who are mourning.

Even if you won't mourn with us, allow us our grief. The people we remember on DDoM deserve to be cried for, and we deserve room for our pain. Let us have that. It's one day a year that isn't about your shoes. Let us have one day where we can be mournful about people ripped from our communities without making it about someone else's goddamn shoes.


Sunday, February 26, 2017

I hope you're proud of yourselves.

I live in the United States, where the political situation is best described as "we are watching the rise of a fascist dictatorship". A+ well done America.

But that's not who I am addressing.

Parents, I am talking to you. Particularly if you support Awareness(TM) and pushes for intensive intervention.

I've met you. A large number of you consider yourselves liberal or even progressive. A large number of you would claim to not support this. A large number of you threatened to move to Canada if this happened.

And that's why I hope you're fucking proud of yourselves.

Not only did you give money to an organization run by a man who supported the Mango Menace, but also you shot yourself in the "running to Canada" foot.

No one will take you now, and it's your fault. I mean, you destined me to fucking rot here, but y'all are all for my death anyway and don't pretend you aren't, I have a file of threats.

No one will take you either and it's your own doing.

Every time you demand 40h/week intensive, expensive therapy? You damned yourself. Every time you complained about how expensive an autistic child is? You damned yourself. Every time you threw a big public fit about what a pain in the ass your child is? You damned yourself.

Because of your Awareness, autism is now a named visa exclusion for many many countries. You have everyone convinced we cost much more than an average child and that we're hopeless drains on everyone else.

All so you could get tea and sympathy at the expense of your child. All in the name of support for yourself, the only real person in the situation.

Never did you think ahead to "maybe the US isn't going to always be a liveable situation", surely you didn't stop to think about how your child may not want to live here for whatever reason. It was all about your tea and sympathy and self pity.

And now you can't run away to Canada or the UK or anywhere else either! And yes, you fucked over me and mine. But you're stuck here too and even as I know I'm dying horribly (aren't you sad it wasn't by your hand? I know at least a dozen of you are) I can point and laugh pettily because you are stuck here too, in this cesspit of a Nazi run dictatorship.

A+ foresight, y'all. Well done.

I hope you're fucking proud. Just know it wasn't worth it. 

Monday, February 13, 2017

Empatica Embrace review, also a moving announcement sort of

 This is the first thing I've written here in a while. For Reasons (like needing to eat) I have made the decision to monetize, while still allowing access to the free content that is why people followed me to begin with. To support me & my writing, please visit My Patreon
 
I kickstarted the Empatica Embrace, a watch that may be able to reduce SUDEP (sudden unexpected death in epilepsy) by detecting seizures via galvanic skin response + motion detection. With a bluetooth connection to a cell phone, it will also alert designated people about a seizure.
 
In theory this is awesome right? The other data tracking it offers (sleep, exercise/activity) are also pretty cool, and the ability to add seizures that it missed? Sign me up. I was super excited.
 
Except...not so much. First, it arrived over 2 months late. It took over a day to fully charge, rather than the indicated two hours, and this did not speed up until I ignored the device entirely for over a month. Finally it charges up faster than it runs down, but it took some time.
 
Data collection is also iffy. It can't really tell anxiety from physical activity, and it has false alarmed at panic attacks and at bumpy roads. It also decided that 12% of its memory will never make it into my account ever. That's just swell.
To add to the data differentiation issue--the bluetooth feature is terrible. It'll lose connection for no reason a hundred times a day. I have to reset the phone and the bluetooth multiple times each day and I have had to reinstall the Alert app over a dozen times. Since it decided to no longer upload all the information, there's a pretty strong risk of it not recording all the relevant data, as it won't just overwrite that 12%. It's silly that it won't talk to my phone when said phone is in my pocket, but it's completely absurd that they can't communicate when the watch is sitting on top of the phone. 
 
The one time it does consistently talk to my phone is when it is time for the false alarm going over the bridge to school. Every day it goes off, every day I mark it false, and the next day it does the same thing. Supposedly if I tap the watch face it will register that the alarm is false instead of sending the call, but that does not seem to be true in reality.
 
Oh and how very alarming that call and text tend to be! They are not customizeable. "K needs your help" is what it says and what it sends. That's an alarming thing to get, even when you know it is probably a false alarm because it's time for me to head to school. Given my way it would just say "This is an alert from K's embrace" or something of that nature, but they won't do customizeable messages.
 
Less irritating than all of this (but a big issue when I recieved the device, everything else is just so much more), and yet still a problem: the device appears to be designed for an average sized adult wrist, although Empatica has been marketing the device to parents of epileptic children. There is no way this is going to properly fit your average child. The face takes up the entirety of the broad side of my wrist. The elastic strap does go tight enough, but that will not bend the rigid part around. Empatica suggests ankle wear, and I did try this, but the elastic strap cuts into the Achille's tendon and this is really uncomfortable and sucks and I couldn't deal with it, nor do I expect most children could. 
 
Finally, support for the Embrace is truly abysmal. They know my issues with the device, before you ask--I've tried for months to get a return and refund. They'll helpfully condescendingly tell you to do the same thing you just did, but there's no way to exchange a malfunctioning device or return one that doesn't work at all. 
 
In pros it does keep good time, if you can read analog. And I guess it's sort of cyberpunk looking if you are into that. 
 
I'd recommend against wasting your money.