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.

Tuesday, November 1, 2016

Autistics speaking day-things you don't want to hear

The title of this is misleading. This isn't just things you don't want to hear--it's things you don't want to hear about things you don't want to hear, and about leaving me alone to speak truth to power while you wait out the storm inside and recycle what I said six months later, or put a richer accent on it, or both.

Specifically, I am going to tell you that which I have told you multiple times. About my own vincibility and vulnerability. Maybe if I say it on Autistics Speaking Day you will make a pretense at listening. Gods know you never have before.

I really don't know what gave you the impression I'm impervious to the verbal abuse heaped on me as I say things parents don't want to hear and you nod and hide. Is it that I've been there before? That's crap and we all know it. Not a single one of you would think that I developed an immunity to bleeding because I've been cut before.

Wait just kidding. So many of you leave me to weather the physical threats and attacks alone as well. Apparently you do think I no longer bleed! Neato! I haven't. I would not have scars if I had. I still bleed.

So, autistic community, I need you to remember I have human psychology and physiology. I don't draw fire off you for funsies. I don't do it because it has no effect on me. It digs into the C-PTSD wounds that you know about and conveniently ignore. I do it so that the next generation will have it better. I am a Gryffindor. I am good, not necessarily nice, and I am brave to my own detriment. Stop making me be brave alone. I've lost my faith in most of you, for using me.

I'm really over being the meat shield for dozens and dozens of people, many of whom have more resources than me. You are hiding from physical, not just emotional, attacks behind a 5'4" woman with adrenal insufficiency. I need you to think about the implications of that. You're willing to knowingly put me in fatal danger to keep yourself relatively safe.

You steal my words.
You steal my ideas.
You splain tactics that have failed a decade ago like they're new.
And you hide behind me from things that will literally kill me far more easily than they will kill you.

That's some bullshit, autistic community.

Parents, you need to fix your house in this regard too. I see you sitting there while your cohort abuses us. Must be nice to be able to hide while people already hurting fight for your kids & you can basically stay out of it. It must be nice to ignore that this will never not be raw for so many of the Warriors.

Don't think I don't notice you using my and other autistics for our activism credentials and then holding to the parent supremacy line the moment things get heated. Don't think I don't see it.

Maybe you're afraid. That's a luxury not afforded to all of us. It must be nice to be allowed normal human vulnerabilities.

I wouldn't know. I've been assumed too used to it for it to matter since before I can remember. Others decided I don't have those anymore. And y'all use that excuse too.

I'm not as strong as you lie to yourselves & pretend I am. I value justice more than I value my own safety, as do many people who've been where I have. Taking advantage of that is still cowardly. You need to be better.

Saturday, April 30, 2016

Don't call me "talented"-BADD adjacent post

This post wasn't exactly written specifically for BADD like my posts for it usually are, but there's an aspect of ableism the phenomenon I'm writing about. There's also a big pile of ableism in the life experiences that lead to my reaction to being cast as "talented". So this is BADD adjacent, bc of timing & because a lot of disabled people relate, based on my small contacts.

Please don't cast me as "talented" or "a natural". Unless you're talking about hyper mobility or pattern recognition, I'm probably not, and it really freaks me out.

The first reason this freaks me out is easy to comprehend: it erases my effort. Hard work beats talent because hard work shows up. I'm probably not "a natural"; my ass is showing up. That deserves recognition, dammit. I'm way more impressed with someone who puts in the hours than someone who just magically can do things, why are you not?

And then you get into the muddle of confusing, "wow you have issues" things. Maybe I do have issues. But that doesn't make this less valid. You don't have to understand it for it to be real, and these reasons were directly caused by other people. So go roll your eyes at them.

The first bit is a common twice exceptional kid thing, I think. I need to be allowed to be not good at things. In my youth (& let's face it, to this day) my worth was determined but what I could do--especially that which came naturally. Things that didn't were considered lost causes. Apparently autistic kids & kids considered smart are born with a full suite of abilities waiting to be untapped, and if it doesn't happen on the first try it is never going to happen. I internalized this attitude before I knew that what I was surrounded with wasn't actually objectively factual. I've had to fight every breath for the right to do things I had to work for (ask me about gymnastics sometime...), and I had no support in learning how to do that work. Instead of "try again!" cheerleaders I had a chorus of voices telling me that there's so much I am good at, why not focus on that? Why do you care about these things that are hard?

It's important for me to do things that are hard. I'm just now starting to get comfortable with the idea that things are hard and I have a ceiling in things and that's ok. Other people also need to be comfortable with this, or at least keep their discomfort to themselves. This is hard-won. I am not good at taking failure gracefully. Don't sabotage my progress.

There's another factor too. I brushed lightly on it in my Dream Student/Nightmare Student post last summer. If I am given room to fail or have to work hard without it being a big production, without "wow I expected more of you" or disappointment or "maybe you should stop doing the thing" or what have you, I do a lot better. A couple of the arenas that people mistake me for a natural in are adjacent to things I've got much experience in coupled with an environment where no one expects perfection right away. Where it's okay to not be a natural. Where it's acceptable that if things change I can't actually adapt quickly. If you put me in an environment that demands immediate excellence, rather than being pleased with it, then I am a mess. The weight of expectations leads to anxiety & actively impedes participating in the thing. Even if it's patterns. Even if it's not getting dizzy. Even if it's code breaking.

Too often the twice exceptional kid gets told she is "so smart" and that is presented as her defining feature and her redeeming value. Anything autistic people in particular are good at gets written off as a splinter skill or savant skill. We're weirdly presumed incapable of learning, so everything we know we must have inherent aptitude for. We are not able to persevere, merely perseverate.

Give us credit for our work. For trying. For progress. For doing things even though they are hard.

Lots of us cannot deal with compliments on abilities at all. I can, but within certain guidelines. Don't tell me I am good at a thing, please. Do not ever tell me I am inherently good at a thing. I will freeze. I will tell you why you are wrong. I will know that not having a skill without trying isn't safe around you. Tell me that an aspect of the activity or subject has improved, or looks nice, is dynamic, some appropriate adjective for the subset. My falls are nice. I made saltatory conduction make sense. You love my toe point. I have a good eye for landing deductions. My arrow shooting form is efficient. Whatever. But not the blanket thing please.

And for the love of all that is good, don't ever say that I'm good "for a disabled person". That's pretty much a different post, but if I'm good, I'm good for an anybody person, and I work just as hard as anyone of my skill level. Acknowledge that.